NYC Hemophilia Chapter

NYC Hemophilia Walk Kickoff Brunch March 3rd

2012-02-09T20:42:00.004-05:00

NYCHC is Calling All Former Team Captains, Future Team Captains, Sponsors and Anyone Who Wants to Help Make the 2012 Hemophilia Walk Our Best Ever!

Please join us for a

2012 Walk Kickoff Brunch
Saturday, March 3rd at 10am at Bareburger

CLICK HERE TO READ MORE OR REGISTER

Tell Your Story: NHF's Washington Days Announced for March 7-9, 2012

2012-01-08T20:13:00.000-05:00

Washington Days, NHF’s annual grassroots advocacy day on Capitol Hill, will take place from Wednesday, March 7 until Friday, March 9th, 2012. This is your opportunity to learn about key legislative issues affecting the bleeding disorders community. More importantly, it’s a chance for you to tell your own story to our elected representatives and their staff members, helping them understand your genuine needs and concerns. Past Washington Days participants have described it as an empowering experience they will never forget. It's important that we send a strong group from across the New York City area to make sure our voice is heard!

CICK HERE TO READ MORE
CLICK HERE TO REGISTER NOW

HHS Issues Bulletin on State Implementation of Healthcare Reform

2011-12-19T11:21:00.000-05:00

On December 16, 2011 the Department of Health and Human Services (HHS) released a bulletin outlining proposed policies on how states will implement aspects of healthcare reform, also known as the Affordable Care Act. This important Federal legislation is designed to ensure that all Americans will have access to quality, affordable health insurance. Some provisions of the legislation have already taken effect and the rest are scheduled to be in place by 2014. The new bulletin addresses the issue of what states will need to do to ensure that insurance plans that will be offered to consumers and small business will cover “essential health benefits.” HHS had already established a list of broad essential benefit categories which include prescription drugs, physician services, emergency services, mental health services, chronic disease management and a number of others.

CLICK HERE TO READ MORE

Major Advance in Gene Therapy for Hemophilia B

2011-12-12T23:22:00.000-05:00

As reported by the New York Times on December 10^th and by a wide variety of other media outlets, medical researchers in Britain have successfully used gene therapy to treat six individuals with Factor IX deficiency also known as hemophilia B. The results represent a major advance not only in the treatment of hemophilia but also in the field of gene therapy which has experienced many setbacks and false starts over the last twenty years.

CLICK HERE TO READ MORE

NYCHC Annual Meeting a Huge Success

2011-12-12T22:52:00.002-05:00

Nearly 300 members of the local bleeding disorders community came together on December 4^th for a day of laughter, learning and lunch at the New York City Hemophilia Chapter 2011 Annual Meeting. It was our highest attendance at any Chapter program outside of the New York City Hemophilia Walk. The event, which was held at the Downtown Marriott Hotel, featured a variety of educational and fun sessions for adults and children. The main session featured a Chapter Update by NYCHC President and Founder Melissa Penn. Penn talked about all of growth the Chapter had experienced in the last year as well as some of the plans underway for the future. The update was followed by a panel discussion entitled “Factor Today and Tomorrow” with participation by representatives of six of the clotting factor manufacturers.

CLICK HERE TO READ MORE

NYCHC Gala an Evening to Remember

2011-11-21T03:33:00.001-05:00

Gala Chair Brad Schoenfeld reads proclamation

s from the city.

On November 5th, more than one hundred guests enjoyed a festive evening at Bayard's in Hanover Square for NYCHC's 2011 Gala. New York State Assembly Member Micah Z. Kellner was presented with the 2011 Award of Distinction in recognition of his service to the community. In 2010, working closely with the bleeding disorders community, Kellner succeeded in getting the Legislature to pass a bill prohibiting the creation of higher co-pay “specialty tiers” for clotting factor drugs used to treat hemophilia along with other biologic drugs. In 2011, he led the battle to get Child Health Plus and other state program to cover clotting factor used on an outpatient basis. In accepting the award, Assembly Member Kellner pledged to continue the fight until the legislation passes.

Assembly Member Kellner receives Award of Distinction

Guests also enjoyed remarks by community member Daniel Kraus who shared a moving account of his experiences growing up as a boy with hemophilia in his native country of Australia. The gala raised crucial funds for NYCHC's programs supporting education, advocacy, and support for research.

NYCHC Addresses HHS on Essential Health Benefits

2011-11-15T02:18:00.002-05:00

NYCHC Executive Director Glenn Mones had an opportunity to present comments to the U.S. Department of Health and Human Services (HHS) at a listening session on November 14th in New York City. The session was part of a series of meetings around the country designed to solicit public comments on what essential health benefits must be covered under the new insurance plans that will be offered under the Affordable Care Act (ACA).

CLICK HERE TO READ MORE

NYCHC Annual Meeting and Holiday Party are Coming!

2011-10-27T16:03:00.000-04:00

The New York City Hemophilia Chapter’s Annual Meeting will be held on Sunday, December 4^th starting at 11:30am at the New York Marriott Downtown. The program will include a panel discussion and question and answer session on advances in clotting factor with participation by representatives of the manufacturers. There will also be a self-infusion workshop, exhibits, a luncheon, activities for children and lots of opportunities to meet old and new friends from the community.

Immediately following the meeting, we will host a fun holiday celebration. The party will feature a visit from Santa Claus with presents for all children eighteen and under. All individuals with bleeding disorders from the Greater New City area and their immediate families are invited to attend these events at no cost. However, advance registration by November 21^st is required and each attendee must have a ticket. Click here to register and request your free tickets now.

For more information or if you have difficulty registering, please call Jeri Krassner at (917) 597-7256.

Parents Support Group on October 27th

2011-10-11T14:55:00.001-04:00

On Thursday, October 27^th from 7:00 – 9:00pm, the New York Comprehensive Center for Hemophilia and Coagulation Disorders at the New York Presbyterian Hospital-Weill Cornell Medical Center will host a support group for parents of children with hemophilia and other bleeding disorders. The program is described as an opportunity to share with other parents and to learn about resources available in the bleeding disorders community. Guest speakers will include Melissa Penn and Glenn Mones from the New York City Hemophilia Chapter (NYCHC) and Linda Mugford and Annie Sukhnandan from Hemophilia Association of New York (HANY). Pizza and light refreshments will be served. RSVP to Jacqueline Lefkowitz, LCSW at (212) 746-4337 or click here for more information.

Val Bias, Marilyn Ness will Participate in Blood Donations Panel on October 18th in New York City

2011-10-11T14:18:00.002-04:00

Filmmaker Marilyn Ness, NHF CEO Val Bias
and Nathan Schaefer of GMHC will be
among participants on October 18th panel.

On Tuesday, October 18^th from 6:00 – 7:30pm, GMHC, one of the largest organizations serving people affected by HIV and AIDS, will host a panel discussion on possible revisions to the guidelines for blood donations, particularly with regard to the current ban on donations from gay men.

The panel, which will be held at GMHC's headquarters on West 33rd street, will be hosted by Marilyn Ness, producer and director of “BAD BLOOD: A Cautionary Tale." Participating will be Val Bias, Chief Executive Officer of the National Hemophilia Foundation along with other speakers. The safety of blood and blood products are an ongoing concern for this community so it is important that we stay engaged, monitor potential changes and voice our views and concerns. RSVP to GMHC at (212) 367-1016 or click here for more information.

New York City Hemophilia Chapter will Honor Assemblyman Micah Kellner at November Gala

2011-08-31T00:45:00.003-04:00

The New York City Hemophilia Chapter (NYCHC) will honor New York State Assemblyman Micah Z. Kellner with the 2011 Award of Distinction. The award will be presented at our Annual Gala on Saturday, November 5^th at Bayard’s, One Hanover Square in NewYork City.

Assemblyman Kellner, who represents New York’s 65^th Assembly District, is being honored for his work on behalf of New Yorkers affected by bleeding disorders and his efforts to improve access to healthcare in New York State. In 2010, working closely with the bleeding disorders community, he succeeded in getting the Legislature to pass a bill prohibiting the creation of higher co-pay “specialty tiers” for clotting factor drugs used to treat hemophilia along with other biologic drugs. In 2011, he led the battle to get Child Health Plus and other state program to cover clotting factor used on an outpatient basis. New York is the only state where the Child Health Insurance Program (CHIP) does not provide this coverage. Efforts to pass this important legislation are ongoing.

Please join us in honoring Assemblyman Kellner for his service to our community.

CLICK HERE FOR MORE INFORMATION OR TO RESERVE SEATS

Emergency Preparedness

2011-08-25T09:11:00.000-04:00

The recent East Coast earthquake and now the approach of Hurricane Irene highlight the importance of being prepared for an emergency at any time. There are a number of simple things that any family or individual can do to prepare for the unexpected. They include picking a central meeting place, having an extra supply of factor and other medicines, keeping copies of medical records in a secure location and many more.

The National Hemophilia Foundation has a document called “At a Glance! Key Steps for Individual/Family Preparedness in an Emergency.” The document text appears below, or you can find a printer-friendly version on the NHF website by clicking here. You may also request that a copy be sent to you via regular mail by sending an email to glenn.mones@nyhemophilia.org or calling (917) 355-7854.

New York City residents can receive emergency notifications from the city by registering at NYC.gov/notifynyc or by calling 311. Additional resources including a hurricane guide are also available on the city’s website at www.nyc.gov. Residents of other areas should contact their local municipality or county government for information on local emergency plans.

NYCHC GALA ON NOVEMBER 5

2011-08-10T12:34:00.001-04:00

The New York City Hemophilia Chapter will hold its 2011 Gala on Saturday, November 5th, with cocktails at five o'clock and dinner at six. The event will be held at Bayard's in India House, located at One Hanover Square in New York City's fabled downtown district. The historic structure, which was built as a family residence nearly three centuries ago, previously served as the New York Cotton Exchange and as a private club for overseas merchants and traders. The building has been completely restored to its former glory and features dramatic architecture, numerous chandeliers and splendid examples of antique nautical art from the period. It will serve as an elegant and festive setting for this very special event.

The Award of Distinction will be presented during the event to New York State Assemblyman Micah Kellner. Assemblyman Kellner sponsored the country’s first successful state legislation prohibiting a high copay "Tier IV" drug category, and more recently he sponsored our legislation designed to get New York’s CHIP program to cover outpatient clotting factor.

The Gala will feature live music, a silent auction, and special guests. Sponsorship packages and individual seats are available. For more information or to make your reservations click here.

There's Still Time to Register for Camp!

2011-07-12T17:43:00.000-04:00

There's still a little time left to register for August sessions at summer camp. The list below features camps that have been popular with families affected by bleeding disorders from the New York area.

Most of the camps do not charge fees although there are eligibility requirements to attend. Families in the Greater New York City area requiring assistance with travel or other expenses can contact NYCHC Manager Jeri Krassner at jeri.krassner@nyhemophilia.org. Please contact each camp individually for all other question including applications. Deadlines for August are near so if you are interested for this season, please contact them right away.

Name: Camp High Hopes
Serves: Boys with bleeding disorders
Ages 7-17
Dates: August 14-20, 2011
Location: Brantingham, NY
Website: www.camphighhopes.org
Call: Kathy Mott 315- 431-4278 or Tom Graham 315-572-0106

Name: Camp Little Oak
Serves: Girls who either have a bleeding disorder or are the sibling of someone with a bleeding disorder
Ages: 7-17
Dates: August 7-13, 2011
Location: Brantingham, NY
Email:: Homer Everson homer.everson@ymail.com or Hope Woodcock hope-mw@hotmail.com
Call: Homer Everson 315-807-6170 or Hope Woodcock 607-222-8412

Name: Double H Ranch
Serves: Boys and girls with bleeding disorders or other chronic conditions
Ages: 6-16
Dates: Various sessions throughout the summer
Location: Lake Luzerne, NY
Website: www.doubehranch.org

Name: Hole in the Wall Gang Camp
Serves: Boys and girls with bleeding disorders and other chronic conditions
Ages: Regular programs 7-15;
“Hero’s Journey” Wilderness Program for Boys with Hemophilia Ages 16-18
Dates: Various sessions throughout the summer; Heroes Journey is July 15-21
Location: Ashford CT
Website: www.holeinthewallgang.org

New Technique Cures Hemophilia in Mice

2011-06-30T11:20:00.000-04:00

Using an innovative gene therapy technique called genome editing that hones in on the precise location of mutated DNA, scientists have treated the blood clotting disorder hemophilia in mice. This is the first time that genome editing has been done in a living animal and achieved clinically meaningful results. As such, it represents an important step forward in the decades-long scientific progression of gene therapy whereby a genetic condition is treated by correcting a problematic DNA sequence.

Click Here to Read More

Virtual Walk for Hemophilia: A Fun Way to Provide Additional Support for Chapters

2011-06-30T11:01:00.001-04:00

Bayer HealthCare has created a “Virtual Walk for Hemophilia” as an additional way to support the National Hemophilia Foundation and its chapters. You can join by going to www.walkforhemophilia.com, creating a “virtual walker” and designating a chapter you are walking for. Anyone with a unique email address can participate, so sign up the kids, grandma, coworkers, friends - and anyone else who wants to help. When the Virtual Walk ends on November 6th, the three chapters with the greatest number of walkers will receive $15,000, $10,000 or $5,000 respectively. There is no cost to participate and your information will not be used for any other purpose without your permission. Please help NYCHC receive these additional funds by joining the Virtual Walk today.

Outpatient Factor Bill Shelved for This Year but Positive Outcomes Abound

2011-06-20T19:00:00.000-04:00

As the New York State Legislature takes its final lap for the season, the New York City Hemophilia Chapter (NYCHC) has received word that no further action will be taken on our outpatient factor legislation this year. The decision has been attributed to remaining uncertainties around the actual cost of the legislation. However, there is still cause for celebration as the process yielded many positive results; the Chapter and our fellow bleeding disorders associations across the state have a lot to be proud of.

CLICK HERE TO READ MORE...

NYC Hemophilia Walk 2011 a Great Success

2011-06-06T11:00:00.003-04:00

More than a thousand community members, families and friends stepped out along the Hudson River on Sunday, June 5 for the sixth annual New York City Hemophilia Walk. The oldest and largest of what is now a year-long series of walks hosted by National Hemophilia Foundation chapters cross the country, the New York City Walk will surpass its goal of $200,000 after all of the commitments are in. Proceeds benefit education and research leading to better treatments and a cure.

Walkers chose from two routes along the river: a one mile route, and a 5k trek for the heartier souls. The festivities featured fun entertainment and attractions for all ages, including singer Joanie Leeds and Silly Billy the magical clown, sponsor exhibits, drawings for JetBlue airline tickets and Bronx Zoo admissions, rainbow bagels and other goodies, and much more. The most important aspect of the Walk was the opportunity for so many community members to just be together and share a fun day with families and friends.

NYCHC wants to thank all of the sponsors, volunteers, team captains, walkers, donors, and everyone who pitched in to make the day a great success. For those who didn’t make it down, it’s not too late to help. You can still sponsor a walker or team, or just donate to the overall event. Just go to www.tinyurl.com/junewalk. We look forward to seeing you at other events throughout the year, and of course at the 2012 New York City Hemophilia Walk.

A Letter from Your 2011 NYC Walk Co-Chairs

2011-05-31T12:00:00.001-04:00

Dear friends,

We hope you had a wonderful holiday weekend! In just a few short days, we’ll be gathered again as families and friends for our sixth New York City Hemophilia Walk on Sunday, June 5^th in Riverside Park. It’s always a beautiful setting in the Park, looking out on the Hudson River. But what really makes the day beautiful is coming together as a community of caring individuals, some personally affected by a bleeding disorder and others there to show their support. There is no adequate way to describe the feeling of being surrounded by community, looking out at all the faces and realizing that for those few hours, there is simply no better place in the world. It is something you have to experience for yourself! Please ask everyone who is planning to walk to sign up in advance by clicking here, or going to www.tinyurl.com/junewalk.

CLICK HERE TO READ MORE

Bad Bood Premieres on PBS in June

2011-05-24T23:09:00.004-04:00

The documentary film BAD BLOOD - A Cautionary Tale, which was screened by the New York City Hemophilia Chapter last November, will have its television premiere on many PBS channels in early June. In the New York City area, it will be shown on the World Channel, which is programmed jointly by New York's WNET and Boston's WGBH. The film is currently scheduled to air in New York on the following dates and times:

Thursday, June 2, 2011 at 10:00 AM, 4:00 PM. 6:00 PM and 9:00 PM
Fri, June 3, 2011 at 2:00 AM
Mon, June 6, 2011, 6:00 AM

The film will also be aired on Saturday, June 4 at 3pm on WLIW.

Click Here to Read More....

NY1 Names NYCHC Founder and President Melissa Penn “New Yorker of the Week”

2011-05-13T19:52:00.000-04:00

Melissa Penn at the New York City
Hemophilia Walk Kickoff Breakfast

Melissa Penn, New York City Hemophilia Chapter’s Founder and President, has been named “New Yorker of the Week” by NY1, a popular all-news television station carried by Time Warner Cable in New York City. NY1 selects a different local resident to profile each week, highlighting their efforts to better the lives of other New Yorkers. This week, they've chosen Melissa and she will be featured in an on-air segment that will start running Friday night, May 13 and will continue airing hourly throughout the weekend. The piece will focus on Melissa’s dedicated work on behalf of New Yorkers affected by bleeding disorders, including her role as the creator and co-chair of the oldest and largest Hemophilia Walk in the country. This year’s Walk will take place on June 5^th in Riverside Park.

Click Here to View the New
Yorker of the Week Segment
Starting Friday Evening, May 13

If you do not receive NY1 at home, you can watch the segment on their website at www.ny1.com where it will remain available for several months.

If you saw the segment about Melissa, please consider supporting our Walk benefiting education and research leading to better treatments and a cure. You can sponsor Melissa, sponsor another walker or team, or sign up to walk yourself. It’s a great day of fun with food, music, entertainment and more – and you don’t need to know someone with a bleeding disorder to help!

Click here to Learn More About and Support the New York City Hemophilia Walk

Click here to sponsor New Yorker of the Week Melissa Penn

Join Us at the Walk and You May Get to Fly!

2011-05-07T21:05:00.001-04:00

JetBlue Airways has made a generous donation to the New York City Hemophilia Walk of two round-trip tickets to anywhere they fly! The Walk, which will take place on June 5 in Riverside Park, brings the entire community together for a day of fun while raising funds for education and research leading to better treatments and a cure. Anyone who either donates or raises $100 or more and then checks in at the Walk will be entered into a drawing to win the tickets. The drawing will be held in the Park right after the Walk and you must be present to win. Help us reach our goal and you may find yourself on a an exciting plane trip with JetBlue! Click here to sign up for the Walk or go to www.tinyurl.com/junewalk.

Ambrosio Family's Extraordinary Walk Efforts Highlighted by Local Newspaper / Website

2011-05-05T18:02:00.003-04:00

The Long Island Herald, a newspaper and website covering Nassau County, has a story hot off the presses covering the extraordinary efforts of the Ambrosio family on behalf of the New York City Hemophilia Walk. Kelly Ambrosio, a member of NYCHC's Board of Directors, and husband Danny host an annual fundraising dinner benefiting the Walk and in honor of their son Christopher who has hemophilia. The dinner, which seems to bring out their entire town and beyond, was held on April 30th. The event raised an astounding $11,000.
Click here to read the Long Island Herald's online coverage
Click here to sponsor "Christopher's Crew" or any of our great Walk teams

Teens 16-19 Needed for NHF-CDC Discussion; Qualified Participants Receive $50 and a Chance to Win an iPod Touch

2011-05-03T18:48:00.006-04:00

The Centers for Disease Control and Prevention (CDC) and the National Hemophilia Foundation (NHF) are seeking teens ages 16-19 to participate in group discussions about living with with bleeding disorders. Qualified teens will receive $50 and a chance to win an iPod Touch. Click here for more information.

New York City Hemophilia Walk Needs You

2011-04-28T22:20:00.003-04:00

The New York City Hemophilia Walk is just five weeks away and we need your help now more than ever! Can your company be a sponsor? Can you start or join a Walk team or sponsor someone on an existing team? Can you volunteer the day of the Walk?

CLICK HERE TO READ MORE | CLICK HERE TO REGISTER

A Tribute to a Brave Young Man: Eshton Scott Hewitt 12/1/94 – 4/6/11

2011-04-28T21:22:00.004-04:00

With current treatments, the vast majority of individuals with hemophilia can live long, fulfilling lives. However, better treatments are not a cure. Many still deal with the immune response to clotting factors known as inhibitors which can lead to continued bleeding and joint damage. In a few rare cases, the complications can be even more severe.

Eshton Scott of Genesee, MI was one of those rare cases. Eshton died of complications of his hemophilia on Wednesday, April 6, 2011 at the tender age of 16. From his obituary: “He touched and influenced more people in his short 16 years of life than most people do in a lifetime. He touched everyone's heart that met him. He fought a good fight.”

FDA Approves Treatment for FXIII Deficiency

2011-04-28T20:37:00.006-04:00

The U.S. Food and Drug Administration (FDA) has approved Corifact™, a plasma-derived factor XIII product, for the routine prophylactic treatment of congenital factor XIII (FXIII) deficiency. The FDA approval was made after positive results of a clinical study of 14 patients with congenital FXIII deficiency.

FXIII deficiency is a rare disease that affects 1 out of every 3 to 5 million people in the U.S., or approximately 150 people. The condition is characterized by blood that clots normally, but the clots are unstable, so bleeding recurs. READ MORE

April 17th is World Hemophilia Day

2011-04-16T21:06:00.002-04:00

On April 17th, communities around the globe will observe World Hemophilia Day, a time to remember that many with bleeding disorders still lack adequate care. Learn more by visiting www.wfh.org.

Community Members Enjoy Food, Friends and Fun at Bronx Zoo and Walk Kickoff Breakfast

2011-04-11T21:30:00.014-04:00

With clear skies, great community spirit and the promised reappearance of a cobra named Mia, a great turnout was almost a guarantee when NYCHC hosted our Spring Event on Saturday afternoon of Saturday, April 9 at the Bronx Zoo. More than 200 individuals from the New York bleeding disorders community showed up for what turned out to be a spectacular day of food, friends and fun. Attendees enjoyed a picnic lunch overlooking a flock of pink flamingos while NYCHC Executive Director Glenn Mones provided updates on a flurry of recent and upcoming Chapter activities. Participants also heard a presentation by Aaron Craig, a young community member and filmmaker. Aaron shared highlights of his travels and adventures, including a recent visit to New Zealand for a world summit of young leaders with hemophilia and an upcoming climb on Mt. Kilimanjaro with his brother Alex who also has hemophilia.

Earlier the same day, 75 guests attended the New York City Hemophilia Walk Kickoff Breakfast at the Boat Basin Cafe overlooking the Hudson River. NYCHC President and Walk Co-Chair Melissa Penn encouraged attendees to register Walk teams and start signing up co-workers, family and friends. Guests watched a live demonstration on how to use the Walk website to sign up a team, and NYCHC Board Member Kelly Ambrosio talked about simple ways to get people to walk and donate.

The New York City Hemophilia Walk will take place on June 5th in Riverside Park in New York City. To sign up a team, join a team, donate, or just to learn more, click here. You can also get more information by emailing Jeri Krassner at jeri.krassner@nyhemophilia.org .

Emergency Preparedness

2011-03-17T18:20:00.004-04:00

The crisis in Japan serves as a reminder that emergency situations can happen at any time. However, there are simple things that any family or individual can do to prepare for the unexpected. They include picking a central meeting place, having an extra supply of factor and other medicines, keeping copies of medical records in a secure location and many more. READ MORE...

Spring Event at Bronx Zoo Plus Walk Kickoff Breakfast on April 9th

2011-03-09T09:26:00.012-05:00

Two Great Events = One Great Day!

Spring Event at the Bronx Zoo

NYCHC invites you to join your friends for our Spring Event at the beautiful Bronx Zoo on Saturday, April 9^th, 2011 at 12 noon. The event ticket includes admission to the zoo, a BBQ buffet lunch with hamburgers, hot dogs and other treats, a wide range of rides and attractions, souvenir goody bags and more. There is no charge for this event. However, participation is limited to people with bleeding disorders and members of their immediate family.

Please click here to reserve your tickets for the Spring Event.

Hemophilia Walk Kickoff Breakfast

At 9:30am on that very same Saturday (April 9), NYCHC will host a New York City Walk Kickoff Breakfast at Manhattan’s Boat Basin Café, overlooking the Hudson River. The event is for anyone interested in forming a Walk team, joining a Walk team, or anyone who just wants to learn more. (The actual Walk will be held on June 5, 2011). A complimentary breakfast buffet will be served. For anyone attending both the Walk Kickoff Breakfast in the morning and the Spring Event at the Bronx Zoo in the afternoon, complimentary bus transportation will be provided between the breakfast and the zoo. However, you must reserve tickets for each event separately.

Please click here to reserve your tickets for the Walk Kickoff Breakfast.

If you would like more information about the New York City Hemophilia Walk or are ready to register now and start recruiting friends and raising money, please click here. You can also get more information about either event by contacting Jeri Krassner at jeri.krasner@nyhemophilia.org.

WFH Conducts Survey on Consumer Access to Clinical Trials

2011-02-28T17:28:00.008-05:00

The World Federation of Hemophilia (WFH) is conducting a survey asking consumers and their families, about their perceptions of the challenges of conducting clinical research in hemophilia treatment centers (HTCs). This includes patients’ access to and attitudes towards trials of new products. This survey is for consumers only; a separate survey has been sent to clinicians. The answers will help WFH understand how they may best support HTCs and consumers interested in research, thereby improving the care of people with bleeding disorders globally.

WFH has requested that as many consumers as possible fill out the brief survey which should only take five minutes. It can be completed any time between now and March 15, and they will be reporting on their findings at a later time.

If you would like to assist in this effort, please click here to complete the survey.

For more information about this and other WFH efforts, please visit their website at www.wfh.org.

Advocate for Your Community: Join Us for Albany Hemophilia Days on March 6-7

2011-02-21T13:19:00.002-05:00

Albany Hemophilia Days, an annual grassroots advocacy effort at the New York State Capitol, will take place on Sunday and Monday, March 6-7, 2011. Families and individuals affected by bleeding disorders from across the state will be participating. This is your opportunity to learn about key state issues affecting your family and the community at large. More importantly, it’s a chance for you to tell your own story to our elected representatives in Albany and their staff members, helping them understand your genuine needs and concerns. This year, we will be focusing in particular on getting coverage for outpatient (home use) clotting factor under programs like Child Health Plus and Family Health Plus. If you’ve ever had a challenge getting or keeping your insurance coverage, this is your chance to tell your story.

The program will start on the afternoon/evening of Sunday, March 6th with dinner and a review of key issues and strategies. On Monday the group will head to the State Capitol for a full day of face-to-face meetings with members of the Assembly and Senate and their staff to share personal stories and ask for support. To see the full schedule of events, click here.

Rooms have been secured at the Desmond Hotel in Albany, where the Sunday events will also take place. Hotel and transportation costs for a limited number of participants will be covered, and dinner Sunday evening is also included. If you would like to join us or have questions, please send an email to Glenn Mones at glenn.mones@nyhemophilia.org.

Albany Hemophilia Days is an important way to advocate for your family and your community. Please join us!

NYCHC NEWS RELEASE

2011-02-08T12:45:00.009-05:00

For Immediate Release

Please Contact: Jeri Krassner, Manager at (917) 597-7256 jeri.krassner@nyhemophilia.org

New York City Hemophilia Chapter Announces New Leadership
Glenn Mones Named Executive Director
Melissa Penn is Chapter President

New York, NY – February 9, 2011 – The New York City Hemophilia Chapter (NYCHC) has announced important changes in chapter leadership, including the appointment of Glenn Mones as the organization’s full-time Executive Director. Melissa Penn, who previously served as volunteer Executive Director, was named chapter President. She assumes the role from Shari Bender, who has served on the chapter Board since its inception. Although Bender recently rotated off the Board, she will continue her involvement with the chapter working on new media projects.

“We’re very excited to have someone with Glenn’s background, knowledge, experience and talent take on the professional leadership of our chapter,” said Penn. “We’ve grown so much in the few short years since we started. This is our chance to take things to the next level and beyond as we strive to meet the needs of people with bleeding disorders in the Greater New York City area,” Penn said.

Mr. Mones has more than twenty years of experience at major nonprofit organizations, including senior positions at Planned Parenthood Federation of America, UJA-Federation of New York, and at the National Hemophilia Foundation where he served as Director of Communications and later as Vice President for Public Policy. While at NHF, Mones played a key role in getting the elimination of lifetime health insurance caps into healthcare reform. More recently, he has served as Director of Communications for NYCHC where he introduced many innovations to the chapter’s communications program and authored a successful PACT Grant application in support of expanding access to care in New York State. “I’m extremely gratified to have been given this opportunity to serve the bleeding disorders community in this exciting new role,” Mones said. “This is a huge community with great needs but equally great potential. I’m looking forward to working with the entire chapter leadership to fulfill our critical mission and goals,” he said. Glenn Mones can be contacted by email at glenn.mones@nyhemophilia.org.

Other changes in chapter leadership include the appointment of Board members Wendy Chou and Bradley Schoenfeld as Vice President and Treasurer respectively. Penn, Chou, and Schoenfeld are all parents of children with bleeding disorders and all have significant records of service to the chapter and to the bleeding disorders community.

NYCHC’s mission is to foster a sense of community amongst people affected by bleeding disorders and to assist them and their families in helping each other through shared experiences and mutual support. NYCHC is a chapter of the National Hemophilia Foundation and a member of the Hemophilia Federation of America.

Advocate for Your Community at Washington Days 2011

2011-01-06T20:36:00.003-05:00

Washington Days, NHF's annual grassroots advocacy day on Capitol Hill, will take place from February 16-18, 2011. This is your opportunity to learn about key legislative issues affecting the bleeding disorders community. More importantly, it’s a chance for you to tell your own story to our elected representatives and their staff members, helping them understand your genuine needs and concerns. Past Washington Days participants have described it as an empowering experience they will never forget. It's important that we send a strong group from across the New York City area to make sure our voice is heard!

The Washington Days program will start on the evening of Wednesday, February 16th with a review of key issues, followed by a networking reception. On Thursday the group will hit the Hill for a full day of face-to-face meetings with members of Congress and their staff to share personal stories and ask for support. On Friday, attendees may participate in a training session and discussion designed to explore issues and improve our effectiveness at the state level. New this year is a special dinner and presentation following the Hill visits on Thursday.

NHF has secured a discounted room rate of $159 (single, double or triple) plus applicable taxes at the Crystal Gateway Marriott hotel. That rate is only available until January 24th, after which rates may increase. Before making your room reservation, you must register by going to www.hemophilia.org and clicking on the Washington Days Banner near the top of the page. If you decide to participate, please also let us know by sending an email to Jeri Krassner at jeri.krassner@nyhemophilia.org.

The New York City Hemophilia Chapter (NYCHC) has a limited amount of funding available for families and individuals who find the travel costs prohibitive. If you would like to request this assistance, please email jeri.krassner@nyhemophilia.org. You will be asked to complete a brief application. The deadline for requesting funding is Tuesday, January 18^th.Every effort will be made to accommodate as many families as possible.

For more information about NHF’s Washington Days, please visit www.hemophilia.org.

Record Crowd Attends NYCHC's Annual Meeting and Holiday Party!

2010-12-15T22:25:00.008-05:00

An unprecedented crowd of more than 250 registered participants came to New York’s Downtown Marriott on Sunday, December 12th for NYCHC’s Annual Meeting and Holiday Party. Meeting highlights included an informative presentation by Dr. Christopher Walsh who directs the Hemophilia Treatment Center (HTC) at Mount Sinai. Dr. Walsh talked about the current state of care, including recent developments as well as new treatments on the horizon. Using the refrain “bleeding is not an option,” Dr. Walsh emphasized that the goal of all treatment is the complete prevention of bleeding and its complications. He stressed the importance of prophylaxis in achieving this goal.

The program also featured an engaging presentation by Laurie Kelley on the status of care in the developing world and some of the things she and others are doing to improve it. Laurie is the founder and head of Project Share, which arranges clotting factor donations for patients in developing countries, and Save One Life, which sponsors individual children with hemophilia in those countries. Laurie’s presentation included dramatic slides and videos, many taken during her travels. They illustrated the terrible situations patients face in countries where care is either at a very low level or completely unavailable. Many attendees were visibly moved to tears by the stories of children who had lost their lives to complications of untreated bleeding disorders. On a more upbeat note, some of Laurie’s stories had happy endings as children who obtained donated factor and other forms of assistance in time had astounding turnarounds and are now enjoying better health and lives.

Participants also enjoyed a presentation by NYCHC President Shari Bender, who reviewed the chapter’s numerous accomplishments over the past year, including a very successful New York Hemophilia Walk, a capacity-crowd screening of the Bad Blood documentary, an expanded communications program and many more. Other educational sessions included group discussions on aging and transitions, inhibitors, and a self-infusion demonstration.

More than just an opportunity for learning, NYCHC’s Annual Meeting and Holiday Party was also a chance to enjoy friends, food and fun. An active children’s room featured arts and crafts, video games and more, all leading up to a visit by Santa Claus towards the end of the afternoon. Every child up to 18 years of age received a special holiday gift.

NYCHC’s Annual Meeting and Holiday Party is part of a year-long series of events designed to provide families affected by bleeding disorders with information, education and a sense of community. Please follow us on facebook and twitter to learn more about our ongoing programs and activities.

World Aids Day is Wednesday, December 1st

2010-11-29T13:00:00.006-05:00

Wednesday, December 1st is World AIDS Day. Have you seen the Bad Blood documentary yet? NYCHC's screening may be over, but you can still order your own copy at www.BadBloodDocumentary.com.
For more ideas on how to commemorate World AIDS Day and make a difference, visit www.worldaidsday.org.

NYCHC Fall Event!

2010-10-15T13:59:00.004-04:00

The New York City Hemophilia Chapter celebrated it's 2nd Annual Fall Fundraising event at Hotel Pennsylvania in Manhattan on Oct. 10th. Pictured left is distinguished honoree Hope Woodcock, along with NYCHC Executive Director Melissa Penn (l) and Board President Shari Bender (r). Photos from event can be viewed at www.longislandphotoguy.com. Password: NYCHC. Enjoy!

Victory for Women Dress Update

2010-09-24T16:52:00.015-04:00

NYCHC President Shari Bender and Designer Dana-Maxx Pomerantz reviewing fabric choices for the Limited Edition 'Victory for Women' dress, created to increase awareness and raise funds for women with bleeding disorders. 'Victory for Women' is the National Hemophilia Foundation's new women's initiative. Community members received a Sneak Preview of the exclusive Dana-Maxx dress at NYCHC's Fall Fundraiser 10/10/10. Dress will be available for purchase in early November, just in time for all your Holiday parties! Stay tuned.

10/10/10 Fundraising event!

2010-09-13T16:49:00.010-04:00

Special thanks to Event Chair Bradley Schoenfeld, and Dinner Committee Shari Bender, Lisette Dipena, Marilyn Ness and Sarah Schapiro for an outstanding evening.

Victory for Women 2011 Calendar Shoot

2010-08-26T09:40:00.006-04:00

NYCHC President Shari Bender, along with her daughter Rose, celebrated the National Hemophilia Foundation's "Victory for Women" 2011 calendar photoshoot in NYC. Shari and Rose are pictured with legendary photographer Patrick McMullan. NYCHC is proud to be a part of this campaign to increase awareness and empower women with bleeding disorders. Shari is wearing a custom-made Dana-Maxx dress and is working with NYC designer Dana-Maxx Pomerantz to design an exclusive "Victory for Women" dress, with proceeds going to support NHF's initiative. Stay tuned for more info about the calendar and dress release!

New York City Hemophilia Chapter Names Glenn Mones Director of Communications

2010-08-10T22:44:00.001-04:00

The New York City Hemophilia Chapter (NYCHC) has appointed Glenn Mones to the position of Director of Communications, according to chapter President Shari Bender. “We’re thrilled to have Glenn as the newest member of our professional team,” Bender said. “Glenn’s extensive knowledge and experience will really help the chapter achieve its goals and mission,” Bender said.

Mr. Mones has more than twenty years of experience at major nonprofit organizations, including senior positions at Planned Parenthood Federation of America, UJA-Federation of New York and at the National Hemophilia Foundation. “I’m very pleased to have this opportunity to continue contributing to the bleeding disorders community and to work with the wonderful folks at NYCHC,” Mones said.

“Glenn will be focusing on helping us improve and expand our communications and educational programs,” said Melissa Penn, Chapter Executive Director. “The goal is to identify, educate, inform and ultimately engage more members of the community, including people affected by bleeding disorders and supporters,” Penn said. The strategy will be to improve and expand existing vehicles like the chapter newsletter, website and others, while developing new strategies and tools to cast a wider net,” she said.

NYCHC’s mission is to foster a sense of community amongst people affected by bleeding disorders, to assist them and their families to help each other through shared experiences and mutual support. NYCHC is a chapter of the National Hemophilia Foundation and a member of the Hemophilia Federation of America.

Save The Date- Fall Fundraising Event- 10/10/10!

2010-07-14T16:50:00.000-04:00

Summer Social Hour!

2010-06-10T07:13:00.014-04:00

Hanging out with the NYCHC Board and new NHF Chairman was a cool way to spend a hot NYC evening. Wishing everyone a safe and fun rest-of-summer!

2010 NYC Hemophilia Walk our Best ever!

2010-06-06T18:01:00.017-04:00

Thanks to all those who participated in NYC Hemophilia Walk on June 6th. About 1000 Walkers flooded Riverside Park and raised close to $200,000!!!!! Check out photos on our Facebook NYCHC Fan Page or on Flickr. And yes, you can still donate !

Walk Kick Off Meeting

2010-04-19T18:03:00.001-04:00

NYCHC Board President Shari Bender and Executive Director Melissa Penn officially Kicked Off 2010 Walk Season at Ben's Deli in NYC on May 6th. Visit our website www.hemophilia.org/walk and select "New York" from the Drop Down Menu to jumpstart fundraising TODAY! Or click here.

Countdown to NYC Hemophilia Walk begins!

Please direct any Walk-related questions to Walk Manager jeri.krassner@nyhemophilia.org .

NHF 2010 Inhibitor Summits

2010-03-24T22:01:00.000-04:00

August 5-8
Houston, TX

OR

August 19-22
Boston, MA

There is no registration fee, travel and lodging grants may be available for eligible patients, and meals are included.

Register here

NHF 2010 Annual Meeting

2010-03-18T22:03:00.000-04:00

Nov. 11-13

New Orleans, LA

Grants to cover airfare, hotel and/or registration fees may be available for first time attendees.

Register here

World Hemophilia Day

2010-03-16T10:46:00.002-04:00

World Hemophilia Day was observed on April 17, 2010

Visit the World Federation of Hemophilia's website wfh.org for more information.

Annual Spring Event

2010-02-01T01:15:00.016-05:00

Over 100 people joined us at ESPN Zone on March 7th for lunch, games and a chance to meet/talk to others in our community affected by bleeding disorders.

We look forward to seeing you at our next event!

HAPPY NEW YEAR from NYCHC

2009-12-18T12:26:00.009-05:00

NYCHC rang in the New Year on Thursday, January 7th at SIP bar café and got energized for the 2010 Hemophilia Walk season. Happy New Year from NYCHC!

HAPPY HOLIDAYS FROM NYCHC!

2009-09-22T12:16:00.014-04:00

Thanks to all those who attended our 2nd Annual Meeting/Holiday Party at Chelsea Studios Dec. 6th.

Attendees participated in educational sessions and breakout talks, watched a self-infusion demonstration and all the kids had a special visit from Santa!

We look forward to seeing you at our next event!

NYCHC Fall Fundraiser 2009

2009-08-23T15:23:00.016-04:00

THANK YOU FOR YOUR SUPPORT OF NYCHC'S FIRST FALL FUNDRAISER, September 25, 2009.

$17,000 was raised and a fun time had by all at Hotel Penn, NYC.

Cheers!

NYC HEMOPHILIA WALK '09- a great success!!!!

2009-07-12T20:56:00.001-04:00

Over 700 people flooded Riverside park on July 12th and enjoyed live music and entertainment, rainbow bagels and ice cream! The Walk was a great success, raising over $120,000 to help people with bleeding disorders. If you still wish you donate, please visit www.hemophilia.org/walk. Thank you for your support, and we look forward to seeing you at our next event!

NYCHC Socials @ Stout NYC

2009-07-03T20:37:00.012-04:00

NYCHC members enjoy a night out at STOUT NYC for after-work drinks, darts and discussion. Be sure to join the fun at our next Social!

2009-06-29T11:44:00.024-04:00

Click here to view the December Edition of NYCHC Update, our electronic newsletter.

Click on the image to the left to view the Fall/Winter 2011 Edition of of "The Bleeding Times," our print newsletter, or use the links below to view past editions.

Spring/Summer 2011
Fall/Winter 2010
Spring/Summer 2010

Fall/Winter 2009
Spring 2009

To subscribe, please register using the button on the right side of the page.

To advertise in our print or electronic newsletters, please email jeri.krassner@nyhemophilia.org

2009 Spring Event at ESPN Zone

2009-06-29T11:30:00.001-04:00

Over 100 people came to NYCHC's Spring Event at ESPN Zone March 8th. Guests enjoyed a delicious lunch program with a guest speaker from the National Hemophilia Foundation. Kids and adults alike enjoyed playing in the famous ESPN Zone arcade and meeting with other individuals and families with bleeding disorders. We look forward to seeing you at our next event.

Resources

2009-06-29T11:16:00.039-04:00

These resources are provided as a service to our members. In most cases, you can click on the name of the resource and it will bring you to the relevant website. As these are outside agencies and organizations, NYCHC has bears no responsibility for the content of these websites or the information and services these organizations provide.

National and International Hemophilia Organizations

Coalition for Hemophilia B (212) 520-8272

National organization for people affected by Factor IX Deficiency

Hemophilia Federation of America (800) 230-9797
National organization for people affected by bleeding disorders

National Hemophilia Foundation (800) 42HANDI

National organization for people affected by bleeding disorders

World Federation of Hemophilia 1 (514) 875-7944
International organization for people affected by bleeding disorders

Save One Life (978) 352-7652
Sponsors efforts to improve the lives of people with bleeding disorders in the developing world

Hemophilia Treatment Centers

Local NYC area Hemophilia Treatment Centers (HTC) are listed below. For additional centers throughout New York state and the entire country click here.

Long Island Jewish Medical Center

Hemophilia Treatment Center
Oncology Institute, Room 358
270-05 76th Avenue
New Hyde Park, NY 11040
Phone: (718) 470-7380
Fax: (718) 347-8903

Mount Sinai School of Medicine

Regional Comprehensive Hemophilia Treatment Center
5 East 98th Street, 12th floor
Box 1078
New York, NY 10029
Phone: (212) 241-8303
Fax: (212) 722-6079

Weill Medical College of Cornell University

Regional Comprehensive Hemophilia Diagnostic
and Treatment Center
525 E. 68th Street, Room P-695
New York, NY 10021
Phone: (212) 746-3418

Insurance and Reimbursement Resources

NHF's HANDI (800) 42HANDI
Comprehensive information resource on all aspects of bleeding disorders including insurance and reimbursement issues.

Patient Services Inc. / A.C.C.E.S.S. Program (800) 366-7741
Provides assistance with premiums and co-payments for eligible clients as well as advocacy support on individual reimbursement challenges.

Hemophilia Association of New York (212) 682-5510
Services offered include reimbursement counseling as well as premium, co-payment and other forms of financial assistance for eligible clients. HANY also offers information and education, a 24-hour help line, quarterly newsletters, counseling, and funding for medical research

Bleeding Disorders Legal Hotline (800) 520-6154
Provides legal advice for individuals with bleeding disorders encountering reimbursement and other challenges.

New York State Medicaid
Information page provided by the New York State Department of Health

New York Health Access
Provides a variety of resources on insurance and healthcare in New York State including Medicaid, Medicare, private insurance, and expanding options under healthcare reform.

More Insurance Resources: Individuals facing insurance and reimbursement challenges may also contact the staff at their Hemophilia Treatment Center (see above), specialty pharmacy representatives (homecare) as well as the staff of the New York City Hemophilia Chapter (NYCHC).

Assistance with obtaining factor is also available through programs sponsored by the individual clotting factor manufacturers. You do not necessarily need to have previously used a company's product to be eligible for their program. Please contact the individual manufacturers for more information.

Research, Fellowships, Medical Information and Data Collection

NHF's HANDI (800) 42HANDI
Comprehensive information resource on all aspects of bleeding disorders including insurance and reimbursement issues.

NHF's Medical and Scientific Advisory Council (MASAC)
Issues recommendations and advisories on treatment, research and other general health concerns of the coagulation disorders community.

NHF Research Grants
Information on NHF Research Grants Programs including Career Development Awards, Judith Graham Pool Postdoctoral Research Fellowships, Clinical Fellowship Program and Fellowships in Nursing, Social Work and Physical Therapy.

American Thrombosis and Hemostasis Network (ATHN)
Works with clinicians, patients and national organizations to promote new data collection technology and maintain a national database designed to improve clinical outcomes and support research.

Universal Data Collection System (CDC) of the Centers for Disease Control and Prevention
Collects data on complications of bleeding disorders to increase medical knowledge and improve treatment.

Centers for Disease Control and Prevention (CDC) - Blood Disorders Page
Federal agency; works to prevent and reduce complications experienced by people with certain blood disorders.

National Heart Lung and Blood Institute - Blood Diseases Page
Federal agency; supports research and provides a variety of information on bleeding disorders.

Hemostasis and Thrombosis Research Society (HTRS)
Dedicated to advancing research, education and mentorship to improve care of persons with disorders of hemostasis and thrombosis.

International Society on Thrombosis and Haemostasis
Worldwide organization dedicated to the advancement of understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders.

Women and Bleeding Disorders

NHF's Victory for Women with Blood Disorders
Provides a variety of programs, resources and information for women with bleeding disorders.

HFA's Blood Sisterhood
Peer network of women who support women with bleeding disorders on their life’s journey through diagnosis, treatment and day to day living.

LadyBugs Foundation
Nonprofit organization dedicated to serving women with bleeding disorders.

MyGirlsBlood
Organization dedicated to creating a worldwide support network for women and girls with bleeding disorders.

Other Resources

Steps for Living - Education for All Life Stages (NHF)
One-stop resource for information on bleeding disorders for kids, adolescents, parents and health educators to promote healthy living for the whole family.

Emergency Preparedness Guide (NHF)
Information on how to prepare for a crisis.

About Us

2009-06-29T00:08:00.053-04:00

Our Mission

The New York City Hemophilia Chapter (NYCHC) is a non-profit 501(c)3 organization incorporated in 2008 to address the needs of the bleeding disorder community in the greater NYC area. NYCHC's mission is to foster a sense of community amongst people affected by bleeding disorders, and to assist them and their families through information, education, advocacy, shared experiences and mutual support.

NYCHC is a Chapter of the National Hemophilia Foundation and a member affiliate of Hemophilia Federation of America.

Board of Directors

Melissa Penn, JD, MPH - President

Melissa Penn is a lawyer with an expertise in public health. She has spent her career in public service, from working with adults with developmental disabilities, to working as an attorney for the City of New York, and as the Administrator of the New York Blood Center's National Cord Blood Program.

Melissa became involved with the Hemophilia Community after her oldest son was diagnosed with severe hemophilia A. To raise money for NHF, Melissa started the Hemophilia Walk in 2006 in Riverside Park, NYC, inspiring the National Walk Program which raised over $1 million dollars in its inaugural year.

Melissa received her undergraduate degree at Univ. of Massachusetts, law degree from Rutgers Law School, and her Masters in Public Health in Health Policy and Management from Columbia University School of Public Health. She lives in Manhattan with her husband and four children.

Melissa can be contacted at melissa.penn@nyhemophilia.org.

Wendy Chou - Vice President

Wendy Chou is President & CEO of CHOUmedia, a full-service marketing and PR firm. She brings over ten years of experience to NYCHC, in the realm of marketing, branding, event planning and project management. Wendy served as co-chair for the 2009 NYC Hemophilia Walk in Riverside Park.

Wendy holds a Bachelor of Science from Beloit College and also studied at Lingnan University in Hong Kong enrolled in the China Business Studies program. She lives in Brooklyn with her three children; two of whom have hemophilia, one of which is a carrier.

Wendy can be contacted at wendy.chou@nyhemophilia.org.

Bradley Schoenfeld - Treasurer

Bradley works as a Group Account Manager at Allied Integrated Marketing, one of the largest full service, integrated marketing firms in North America, focused on the entertainment industry and consumer brands. Holding a Bachelor of Science from Towson University, Bradley carries dual degrees in Business Administration, Marketing, along with an Advertising Interdisciplinary Specialization. His professional experiences handling advertising, promotions and publicity for numerous major motion picture studios, offer a unique blend of Marketing resources to NYCHC.

Borrowing tactics from his profession, he was instrumental in helping to formulate the marketing strategy for the documentary feature “Bad Blood: A Cautionary Tale”, orchestrating the key art / poster design, and currently serves as the film’s publicist.

Bradley is actively involved in the bleeding disorder community on various levels including fundraising and education, and is a member of the Coalition for Hemophilia B. In addition to serving on the NYCHC Board, he is the Chairperson of the Annual Gala, and is part of the organization’s executive committee, currently acting as Treasurer for 2011.

He lives in Forest Hills, NY with his wife and young twin sons; both of whom have severe hemophilia B.

Bradley can be contacted at bradley.schoenfeld@nyhemophilia.org.

Kelly Anne Ambrosio, RN

Kelly is a Registered Nurse for the NSLIJ Health System. For the past eight years she has worked in high risk obstetrics, the emergency department, and currently works at NSLIJ Region Care, a home infusion company.

Kelly has a passion for helping others, and besides working as an RN, volunteers her time for the Lynbrook Fire Department Emergency Medical Company as an advanced medical technician, AEMT, for the past 10 years. Kelly currently holds associate member status in the Department.

Kelly is always willing to help and strives to become involved in the hemophilia community. She became involved in the first hemophilia Walk in 2006, and has been a top fundraiser for subsequent Walks.

Kelly, along with her husband and three young children, live on Long Island. Her oldest child is 5 yrs old and has severe hemophilia A, with inhibitors.

Kelly can be contacted at kelly.ambrosio@nyhemophilia.org.

Laural Boone

Laural Boone is an intellectual property attorney with a PhD from the University of Chicago. She also was a post doctoral fellow at Rockefeller University in Cellular and Molecular Biophysics. She is a carrier for hemophilia A, and lives in Manhattan with her spouse and son.

Laural can be contacted at laural.boone@nyhemophilia.org

Daniel Kraus

Born and raised in Australia, Daniel studied at Monash University before relocating to Yeshiva University where he completed his BS in Management. He has extensive experience as a professional in the nonprofit world including his current position as Cheif Operating Office of the Manhattan Jewish Experience, a cutting edge program for young professionals.

Daniel has hemophilia and is very committed to giving back to the community. He has participated in NHF's Washington Days, served on the NYCHC 2011 Gala Committee and was instrumental in arranging an important publicity opportunity for the Chapter on the New York 1 all-news channel.

Most recently, Daniel completed his Rabbinical Ordination in Israel. He lives in Manhattan with his wife and two children.

Daniel can be contacted at daniel.kraus@nyhemophilia.org.

Sarah Asekoff Schapiro

Sarah Asekoff Schapiro is employed by Nine Thirty Capital; a registered investment advisor based in New York that designs and manages customized investment portfolios for prominent families and institutional clients from around the world. Sarah is in charge of Communications and has been with the company since it launched in 2004. Sarah was previously employed for ten years by Jacobson Family Investments, Inc. (JFI), a diversified family investment company. At JFI, Sarah was responsible for setting up and maintaining the infrastructure of the company.

Sarah attended Rutgers University in NJ and she has a degree in Communications. She is involved in various organizations such as Solomon Schechter Day School of Essex and Union, and Temple B'nai Shalom. Sarah lives in West Orange, NJ with her husband and daughter. Sarah has become involved in the bleeding disorder community as she herself has severe hemophilia A.

Sarah can be contacted at sarah.schapiro@nyhemophilia.org.

Staff

Glenn Mones – Executive Director

Glenn Mones has worked in the nonprofit arena for more than twenty-five years, holding senior leadership positions at Planned Parenthood Federation of America, UJA-Federation of New York, and the National Hemophilia Foundation. His areas of expertise include healthcare marketing and communications, advocacy and public policy, fundraising and development, and nonprofit administration. During his tenure at NHF, Glenn played a key role in getting the issue of lifetime health insurance caps onto the national agenda and into healthcare reform. He is a lifelong resident of New York City.

Glenn can be contacted at glenn.mones@nyhemophilia.org.

Jeri Krassner - Manager

Jeri has served for two years as the manager of the successful NYC Hemophilia Walk and is now the overall chapter manager. Jeri worked previously as office manager at the National Cord Blood Program of the New York Blood Center, and before that at Books for Kids and the Associated Press. Jeri brings considerable organizational and administrative skills to her work with NYCHC and the bleeding disorders community and she looks forward to helping the Chapter grow.

Jeri can be reached at jeri.krassner@nyhemophilia.org.

Contact Us

2009-06-28T11:40:00.005-04:00

New York City Hemophilia Chapter (NYCHC)
358 Fifth Ave, Suite 401
New York, NY 10001
(917) 355-7854

Email: glenn.mones@nyhemophilia.org

NYC Hemophilia Chapter

NYC Hemophilia Walk Kickoff Brunch March 3rd

Tell Your Story: NHF's Washington Days Announced for March 7-9, 2012

HHS Issues Bulletin on State Implementation of Healthcare Reform

Major Advance in Gene Therapy for Hemophilia B

NYCHC Annual Meeting a Huge Success

NYCHC Gala an Evening to Remember

NYCHC Addresses HHS on Essential Health Benefits

NYCHC Annual Meeting and Holiday Party are Coming!

Parents Support Group on October 27th

Val Bias, Marilyn Ness will Participate in Blood Donations Panel on October 18th in New York City

New York City Hemophilia Chapter will Honor Assemblyman Micah Kellner at November Gala

Emergency Preparedness

NYCHC GALA ON NOVEMBER 5

There's Still Time to Register for Camp!

New Technique Cures Hemophilia in Mice

Virtual Walk for Hemophilia: A Fun Way to Provide Additional Support for Chapters

Outpatient Factor Bill Shelved for This Year but Positive Outcomes Abound

NYC Hemophilia Walk 2011 a Great Success

A Letter from Your 2011 NYC Walk Co-Chairs

Bad Bood Premieres on PBS in June

NY1 Names NYCHC Founder and President Melissa Penn “New Yorker of the Week”

Join Us at the Walk and You May Get to Fly!

Ambrosio Family's Extraordinary Walk Efforts Highlighted by Local Newspaper / Website

Teens 16-19 Needed for NHF-CDC Discussion; Qualified Participants Receive $50 and a Chance to Win an iPod Touch

New York City Hemophilia Walk Needs You

A Tribute to a Brave Young Man: Eshton Scott Hewitt 12/1/94 – 4/6/11

FDA Approves Treatment for FXIII Deficiency

April 17th is World Hemophilia Day

Community Members Enjoy Food, Friends and Fun at Bronx Zoo and Walk Kickoff Breakfast

Emergency Preparedness

Spring Event at Bronx Zoo Plus Walk Kickoff Breakfast on April 9th

WFH Conducts Survey on Consumer Access to Clinical Trials

Advocate for Your Community: Join Us for Albany Hemophilia Days on March 6-7

NYCHC NEWS RELEASE

Advocate for Your Community at Washington Days 2011

Record Crowd Attends NYCHC's Annual Meeting and Holiday Party!

World Aids Day is Wednesday, December 1st

NYCHC Fall Event!

Victory for Women Dress Update

10/10/10 Fundraising event!

Victory for Women 2011 Calendar Shoot

New York City Hemophilia Chapter Names Glenn Mones Director of Communications

Save The Date- Fall Fundraising Event- 10/10/10!

Summer Social Hour!

2010 NYC Hemophilia Walk our Best ever!

Walk Kick Off Meeting

NHF 2010 Inhibitor Summits

NHF 2010 Annual Meeting

World Hemophilia Day

Annual Spring Event

HAPPY NEW YEAR from NYCHC

HAPPY HOLIDAYS FROM NYCHC!

NYCHC Fall Fundraiser 2009

NYC HEMOPHILIA WALK '09- a great success!!!!

NYCHC Socials @ Stout NYC

Newsletter

2009 Spring Event at ESPN Zone

Resources

About Us

Contact Us