NYC Hemophilia Chapter

Cracking the Code (Bioverativ)
2017-10-25 18:30 - 20:00 UTC | The Stone Manor, 101 Saw Mill River Road, Hawthorne, NY, 10532, United States
Ever wonder how DNA works?

We’ll discuss the basics, including the ways it makes us unique, where it resides in our bodies, how it can affect our health, and the relationship between DNA and hemophilia. Recognizing that we are not all scientists, we’ll breakdown these complex elements into concepts we can all comprehend.
All ages are welcome and on-site parking is free!
This dinner and program are generously sponsored by Bioverativ.

Factor in the Family: Women and Girls Can and Do Have Hemophilia
2017-10-17 18:00 - 21:00 UTC | Mario Restaurant, 644 Vanderbilt Motor Parkway, Hauppauge, New York, 11788
Join us for Factor in the Family: Women and Girls Can and Do Have Hemophilia!

Women with hemophilia B don’t just face unique bleeding challenges – getting the right diagnosis and treatment can be an uphill battle. This program will help all community members advocate for girls and women who have a bleeding disorder, understand the obstacles the “carrier” label may bring, and discover why factor level alone may not dictate a woman’s need for the treatment.
Factor in the Family: Women and Girls Can and Do Have Hemophilia
Tuesday, October 17, 2017
6:00 PM – 9:00 PM
Mario Restaurant
644 Vanderbilt Motor Parkway
Hauppauge, NY 11788

Featuring Speakers:
Stormy Johnson (patient)
Courtney Carr, RN-BC, MSN, CPNP
Courtney is the Hemostasis and Thrombosis Nurse Practitioner and Nurse Navigator at Levine Children’s Hospital Pediatric Hematology, Oncology, and Transplant Clinic in Charlotte, North Carolina. She has been caring for pediatric patients in Charlotte and the surrounding communities for 15 years, the past 4 years concentrating on Hemostasis and Thrombosis patients. She currently has a Hemostasis Nursing Certification as well. Courtney also educates the staff and patients at Levine Children’s Hospital Pediatric Hematology, Oncology, and Transplant Clinic. She received her Bachelor of Science in Nursing from Queens University of Charlotte. She received her Master of Science in Nursing with a focus on Child Health Nursing from State University of New York, Stony Brook.

This dinner and program have been generously sponsored by Aptevo Therapeutics.

Navigating the Changes in Healthcare/Navegando los Cambios en el Seguro Salud
2017-10-10 19:00 - 21:00 UTC | Tosca Marquee, 4034 East Tremont Avenue, Bronx, New York, 10465
This bilingual talk will provide insight into the changes in insurance coverage, specifically navigating New York Medicaid. Attendees will also have the opportunity to share their experiences and situations in order to best prepare for a shifting landscape.
This presentation and dinner are generously sponsored by Shire.

Esta charla bilingüe proveerá información sobre los cambios en la cobertura de seguro, específicamente navegando en el New York Medicaid. Los asistentes también tendrán la oportunidad de compartir sus experiencias y situaciones con el fin de prepararse mejor para un paisaje cambiante.
Esta charla y la cena son generosamente patrocinados por Shire.

Fiesta Spook-tacular!
2017-10-07 15:00 - 19:00 UTC | 48 West 25th Street, 10th Floor, 48 West 25th Street, 10th Floor, New York, New York, 10010

Transition Ignition
2017-10-05 18:30 - 21:30 UTC | Monahan and Fitzgerald’s, 21417 41st Avenue, Bayside, New York, 11361

NYCHC Open House
2017-10-03 18:00 - 20:00 UTC | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States

TORCH Teen Retreat
2017-09-16 08:00 - 2017-09-18 18:00 UTC | PEEC, 538 Emery Rd, Dingmans Ferry, PA, 18328, United States
NYCHC’s TORCH Teen Retreat
Friday, Sept 21- Sunday Sept 23

NYCHC is going on it’s next TEEN RETREAT!
The TORCH Retreat will be held September 21-23, 2018 at the Pocono Environmental Education Center (PEEC), a short 2 hour drive from NYC in the Delaware Water Gap region. Staff includes NYCHC staff, a nurse, young adult mentors, and chaperones in addition to PEEC’s onsite staff.
Featuring:

Canoeing
Hiking
Team Building and Leadership skills
Ropes Course
Mentorship
Friendship
Special guest, Chris Bombardier!
and more!

This retreat is open to all teens ages 13-18 within the Greater NYC bleeding disorders community. It is open to siblings and affecteed teens. This program is absolutely F R E E, however, spaces are limited. Sign up at: bit.ly/TORCHTEENS
For more information or questions, please contact Jeremy Griffin jeremy.griffin@nyhemophilia.org or call (646) 580-1096.

MyALPROLIX Peer Dinner
2017-09-14 19:00 - 21:00 UTC | Nino’s Restaurant, 1110 Hylan Boulevard, Staten Island, NY, 10305
Looking for insights from someone with experience on ALPROLIX?

Join us for an interactive educational experience and meet a MyALPROLIX PeerTM — a patient or caregiver who will share what it’s been like for them. Together we’ll review important information including clinical data, the science behind ALPROLIX, and support resources.
Speakers include:
Michelle M., MyALPROLIX Peer
Melissa Singer, MD, MPH, FAAP Palms West Hospital – Loxahatchee, FL Pediatric Hematology/Oncology
This dinner and presentation are generously sponsored by Bioverativ.

Common Connections: An AFSTYLA Story with CSL Behring (Yonkers)
2017-09-07 17:30 - 19:00 UTC | Zuppa, 59-61 Main Street, Yonkers, New York, 10701
Join us for Common Connections: An AFSTYLA Story!
Thursday, September 7, 2017
Check-in
5:30 PM – 6:00 PM
Presentation
6:00 PM – 7:00 PM

Zuppa
59-61 Main Street
Yonkers, NY 10701

Featuring:
Dawn Hezel, RN, MS, CPNP/CPHON
Four Seasons Medical of Western New York
Buffalo, NY

Hector Grisalez
Cicero, IL

This program offers you and your family member or caregiver the opportunity to:
• Deepen your understanding of hemophilia
• Learn about the clinical profile of new medication
• Discover valuable resources, tools, and support
• Share experiences, ask questions, and gain valuable information and support from others
in the hemophilia community

Anyone under 18 years of age must be accompanied by a parent or caregiver

This dinner and program are generously sponsored by CSL Behring.

Common Connections: An AFSTYLA Story with CSL Behring (Long Island)
2017-09-06 17:30 - 19:00 UTC | Maggiano’s Little Italy, 600 Garden City Plaza, Garden City, New York, 11530
You and a family member or caregiver are cordially invited to join us for
Common Connections: An AFSTYLA Story!
Wednesday, September 06, 2017
Check-in
5:30 PM – 6:00 PM
Presentation
6:00 PM – 7:00 PM
Maggiano’s Little Italy
600 Garden City Plaza
Garden City, NY 11530

Featuring:
Dawn Hezel, RN, MS, CPNP/CPHON
Four Seasons Medical of Western New York
Buffalo, NY

Hector Grisalez
Cicero, IL

This program offers you and your family member or caregiver the opportunity to:
• Deepen your understanding of hemophilia
• Learn about the clinical profile of new medication
• Discover valuable resources, tools, and support
• Share experiences, ask questions, and gain valuable information and support from others
in the hemophilia community

Anyone under 18 years of age must be accompanied by a parent or caregiver

This dinner and program are generously sponsored by CSL Behring.

NHF Annual Meeting
2017-08-24 - 2017-08-26 | Hyatt Regency Chicago, 151 E Upper Wacker Dr, Chicago, IL, 60601
NHF’s 69th Annual Meeting will be held August 24, 2017 – August 26, 2017 in Chicago, Illinois at the
beautiful Hyatt Regency Chicago.
Join us for three days full of educational sessions, networking opportunities, and access to the exhibit hall.
All registrations include entrance to our Opening Session, Awards Luncheon, and the exciting Final Night event.
Childcare is available for children under 12 years old.

Teen Tunnel Tour
2017-08-12 10:00 - 14:00 UTC | Brooklyn Bridge-City Hall
Have you ever wanted to explore the subway system OUTSIDE of the train car?
On August 12th, you can!

We’ll meet outside of the 4/5/6 Brooklyn Bridge-City Hall station and head down together. This private 2-hour tunnel tour for teens will take us through to the old City Hall station, a piece of living NYC history! After the tour, we’ll walk across the Brooklyn Bridge (weather permitting), and grab a bite to eat and hang out at Brooklyn Bridge Pier Park.
This awesome F R E E event is for teens ages 13-18. Spots are extremely limited as the tour is very small.

Being Prepared for a Hemophilia Emergency
2017-08-09 18:30 - 20:30 UTC | Broadway Bistro, 3 South Broadway, Nyack, New York, 10960
Join us for dinner and a presentation on problem-solving approaches to the day-to-day challenges posed by living with hemophilia!
Being Prepared for a Hemophilia Emergency with Jennifer Harris, RN, BSN
Wednesday, August 9 | 6:30pm
Broadway Bistro
3 South Broadway
Nyack, NY 10960
Please feel free to extend this invitation to a anyone whom you think will benefit from this experience.

Jennifer Harris, RN, BSN is a Hematology Clinical Support Specialist with Bayer Healthcare. Prior to her career with Bayer, she was the Adult Clinical Nurse Coordinator at the Hemophilia Treatment Center at Emory University in Atlanta.
This program is generously presented and sponsored by Bayer HealthCare.

NYCHC Comite Latino Picnic de Verano/NYCHC Latino Outreach Summer Picnic
2017-08-06 12:00 - 15:00 UTC | Central Park- Great Hill
El Comité Latino NYCHC quiere celebrar el verano con ustedes! Únase a nosotros en la Gran Colina (Great Hill) en Central Park el domingo 6 de agosto a las 12pm (busca los globos). Vamos a comer, reír, y tener un gran día en el parque. Se proporcionará alimentos, pero traiga algo para comer o beber si lo desea. ¡No podemos esperar para pasar el día con todos!

The NYCHC Latino Outreach Committee wants to celebrate the summer with YOU! Join us at the Great Hill in Central Park on Sunday, August 6th at 12pm (look for the balloons). We’ll eat, laugh, and have a great day in the park. Food will be provided, but feel free to bring something to eat or drink. We also welcome bikes, scooters, and other summer toys! We can’t wait to spend the day with you!

MyELOCTATE Peer Dinner
2017-08-01 19:00 - 21:00 UTC | Allora Italian Kitchen & Bar, 210-35 26th Avenue, Bayside, New York, 11360
Looking for insights from someone with experience on ELOCTATE? MyELOCTATE Peers™ are patients and caregivers who have treatment experience with ELOCTATE and want to give you a look into their life since making the change.
Join us for an interactive educational experience and meet a MyELOCTATE Peer™— a patient or caregiver who will share what it’s been like for them. Together we’ll review important information including clinical data, the science behind ELOCTATE, and support resources. Your CoRe Manager will also be on hand to help you understand more about this treatment option.
Speakers include:
Jennifer B., MyELOCTATE Peer
Claudia MacKaron, RN, CPON University of New Mexico Health Science Center Albuquerque, NM
This dinner and presentation are generously sponsored by Bioverativ.

VWD Happy Hour
2017-07-19 18:00 - 21:00 UTC | 230 Fifth Ave, 230 Fifth Ave, New York, New York, 10001
NYCHC’s VWD Committee invites you to join us at our next happy hour social!
This time, we’ll be at a rooftop bar with great city views. This is a chance to see old friends and make new ones.
VWD Happy Hour
6:00pm-9:00pm
230 Fifth Ave (corner of 27th Street)
New York, NY 10001
When you arrive at the building, state that you are going to the “Outdoor Rooftop”. You will be asked for idenitification, and then proceed to the elevator.
*Please note that it is a ‘buy your own drink’ event.
We hope to see you there!

NYCHC x Luna Park
2017-07-07 15:30 - 22:30 UTC | Luna Park, 1000 Surf Avenue, Brooklyn, New York, 11224
NYCHC X LUNA PARK | FRIDAY, JULY 7

NYCHC wants YOU to join us at LUNA PARK!
3:30 PM – 6:00PM – TEENS (13-18):
Form your team and collect your scavenger hunt clues. Set off into the park and complete the tasks!
Then join us for a wrap-up and BBQ! Wristbands give you unlimited ride access for 4 hours!
9:30PM – 10:30PM – FAMILIES:
Friday nights at Luna Park means fireworks!
After a fun-filled day exploring Coney Island and Luna park, catch the fireworks display with us!
We’ll designate a meeting point and we can all watch the show together!

Dads in Action @ Brooklyn Cyclones
2017-06-25 14:30 - 18:00 UTC | MCU Park, 1904 Surf Avenue, Brooklyn, New York
Dads in Action is back this summer!
Catch the Brooklyn Cyclones on June 25th with other NYCHC dads!
It’s a chance to meet other dads in the bleeding disorders community, relax, and have a great time.
Registration includes the price of food, drinks, and field box seats at MCU Park.
There will be a short program about fitness courtesy of HFA.

June 25, 2017
2:30pm-6:00pm
MCU Park
Brooklyn, NY 11224

Women's Dim Sum Brunch
2017-06-24 10:00 - 12:30 UTC | Jing Fong, 20 Elizabeth Street, New York, New York, 10013
Are you a woman with a bleeding disorder, a carrier, caregiver or all of the above? We want to brunch with you!

We are looking to open our programming up for women and we want to hear your ideas. Let us treat you to a 3-course dim sum brunch in Chinatown! We eat all the dumplings, have a meaningful conversation, and walk away full and full of ideas of how to better support women in the bleeding disorders community. This free event is open to women ages 19+.
Women’s Dim Sum Brunch
Saturday June 24, 2017
10:00am-12:30pm
Jing Fong
20 Elizabeth Street, NY, NY 10013
Please contact Krystle Cheirs-Roberts at krystle.roberts@nyhemophlia.org or (646) 580-1096 for any questions or concerns.

Improving Adherence During Infusions (sponsored by CSL Behring)
2017-06-20 19:00 - 20:00 UTC
Improving Adherence During Infusions (sponsored by CSL Behring)
Tuesday, June 20, 2017
7:00pm-8:00pm

Join Shannon Penica Walters, a behavioral specialist and consultant, as she speaks about behavioral approaches to improve adherence during infusions. The webinar will cover 4 main strategies that can help children adhere to their treatment regimens:
• Distraction
• Differential positive reinforcement
• Counter-conditioning
• Behavioral contracts
After reviewing these strategies, Shannon will explore the successful use of counter-conditioning in one boy with hemophilia. She also shows how behavioral strategies can reduce distress in children, increasing patient safety and satisfaction.
“Parenting a child with a chronic and serious medical condition can be extremely challenging, but with the right tools, resources, and determination, any parent can improve the well-being of both their child and family!” -Shannon

Staying Positive and Raising Children with Bleeding Disorders - Bronx
2017-06-15 19:00 - 20:00 UTC | Jake’s Steakhouse, 6031 Broadway, Bronx, New York, 10471
Thursday June 15, 2017 | 7:00pm-8:00pm
Jake’s Steakhouse
6031 Broadway Bronx, NY 10471
Raising Young Children with Hemophilia
There are many trials and tribulations when children are first diagnosed with hemophilia. In this discussion, we’ll go over tips and tricks to navigate early childhood education, 504 plans, and advocating for your family’s care and wellbeing.
Gina Perez-Wiberg was born and raised in Mexico before moving to the US. She has three children, and her two boys were the first generation in her family to be diagnosed with severe hemophilia B. While a language barrier complicated the initial diagnosis, Gina has developed into a strong advocate for her family and will share her insights on advocating for you and your family’s care.
These programs are presented and generously sponsored by CSL Behring.

Staying Positive and Raising Children with Bleeding Disorders - Garden City
2017-06-14 18:00 - 19:00 UTC | Maggiano’s Little Italy, 600 Garden City Plaza, Garden City, New York, 11530
Wednesday June 14, 2017 | 6:00pm-7:00pm
Maggiano’s Little Italy
600 Garden City Plaza Garden City, NY 11530
Finding the Positives When Living with a Bleeding Disorder
We’ll discuss the challenges with raising children with bleeding disorders, the roles parents take on in their children’s lives, and finding positivity despite adversity.
Hector Grisalez was born in Colombia before moving to the US. He has two children, including a son with severe hemophilia A. Hector plays an active role in his son’s care, helping his family become stronger despite the challenges of living with a bleeding disorder. His story will highlight how to find the positive, for you and your family, in hemophilia.

This program has been generously sponsored by CSL Behring.

Charla de infusión bilingüe/ Bilinual Infusion Workshop
2017-06-10 10:00 - 12:00 UTC | Residence Inn New York/Times Square, 1033 Avenue of the Americas , New York, New York, 10018
¡El Comité Latino de NYCHC quiere que se unan a nosotros para aprender a infundir! En un ambiente tranquilo y alentador, y con la ayuda de enfermeras, aprenderemos a infundir a nuestros hijos ya nosotros mismos. Se servirá el almuerzo. Patrocinado por Bayer Healthcare y BDRN. Este es un evento bilingüe.
Registrarse para unirse a la clase, visite: bit.ly/NYCHCinfuses!

The Latino Outreach Committee of NYCHC wants you to join us in learning to infuse! In a calm and encouraging environment, and with the help of nurses, we will learn to infuse our children and ourselves. Lunch will be provided. Sponsored by Bayer Healthcare and BDRN. This is a bilingual event.

To sign up to join the class, visit: bit.ly/NYCHCinfuses!

Advocacy Dinner + Discussion
2017-06-07 19:00 - 22:00 UTC | The Liberty NYC, 29 West 35th Street, New York, NY, 10001, United States
Is health care important to you?

Join NYCHC’s Advocacy Committee for a night of dinner and discussion about changes in health care policy, patient impact, and what you can do to help protect the bleeding disorders community. This is a free, all ages event.
Wednesday, June 7, 2017
7:00PM-10:00PM
The Liberty NYC
29 West 35th Street
New York, NY 10001
For questions or concerns, please contact Jeremy Griffin at jeremy.griffin@nyhemophilia.org.

NYC Hemophilia Walk 2017
2017-06-04 | Riverside Park, 6681 Riverside Dr, New York, New York, 10025
In 2006, a handful of New York families and friends affected by bleeding disorders went to Riverside Park and started the first Hemophilia Walk.
We realized that by standing together we could make a difference for ourselves and our children. There was excitement in the air that first beautiful day, and the promise of a better tomorrow. Many of you were there with us, and many more joined in the years that followed.
The 2016 Walk teams raised over $313,616.00 as of June 7, 2016.
The 2017 Walk will be held on Sunday, June 4, 2017 in Riverside Park. We have a new location (97th Street entrance near Dinosaur Playground)
and some new activities for everyone!
To create, join, or donate to a Walk team, visit http://hemophiliawalk.donordrive.com/event/newyorkcity.
We’ll see you out there!

NYC Inhibitor Retreat
2017-05-12 19:00 - 2017-05-13 15:00 (America/New_York) | Residence Inn New York/Times Square, 1033 Avenue of the Americas , New York, New York, 10018
New York City Hemophilia Chapter (NYCHC) and the Hemophilia Association of New York (HANY) are proud to present:
The New York City Inhibitor Retreat
Friday, May 12, 2017- Saturday, May 13, 2017
Residence Inn Times Square
1033 Avenue of the Americas, New York, NY 10018

The program will feature opportunities to:

Access and discuss case studies of patients with inhibitors
Participate in peer-to-peer mentoring
Gain insights with medical expertise from Dr. Shannon Meeks
Learn strategies for dealing with the day to day challenges of living with inhibitors
Engage in meaningful activities and programming for kids
Share thoughts, experiences and ideas for strengthening this community

There is no cost for this event which includes meals and an overnight stay at the hotel. However, advance registration is required. In addition, please understand that this program is intended for individuals from the greater New York area who are affected by active inhibitors, but tolerized patients are welcome as well. NYCHC reserves the right to deny participation to those who do not meet these criteria.
If you have difficulty registering or need more information, please contact Krystle Cheirs-Roberts at krystle.roberts@nyhemophilia.org.
Presenting Sponsorship for this retreat is generously provided by Kedrion Biopharma Inc. and Octapharma USA Inc.
Supporting Sponsorship for this retreat is generously provided by Grifols USA.

Spotlight on Unaffected Siblings with Bioverativ
2017-05-09 19:00 - 21:30 UTC | Johnathan’s Restaurant, 2499 Jericho Turnpike, New Hyde Park, NY, 11040
Ever wonder how hemophilia may impact unaffected brothers and sisters?

Raising multiple kids can have plenty of ups and downs, especially if one child has a chronic condition like
hemophilia. Sometimes balancing the needs of the child without hemophilia can be a challenge. This
workshop empowers parents and caregivers with new tools to ensure that each child’s needs are met.
Join us for dinner and a discussion on tools for parenting affected and unaffected siblings!
This educational program and dinner is generously sponsored by Bioverativ.
Hosted by: Lisa Schmitt, Bioverativ CoRe Manager
Jonathan’s Restaurant
2499 Jericho Turnpike New Hyde Park, NY 11040
Tuesday, May 9, 2017 7:00pm

Please RSVP by May 5, 2017 at http://bit.ly/siblingsdinner.
For questions or concerns, please contact Jeri Krassner at jeri.krassner@nyhemophilia.org.

Carriers Retreat (BDANENY)
2017-04-28 - 2017-04-30 | The Carey Conference Center, 63 Huyck Rd, Rensselaerville, NY
Many women who carry the hemophilia gene have the same symptoms of those with hemophilia. This retreat will focus on women who are carriers and their concerns. Sessions will be geared to learning more about your bleeding disorder and learning how to handle your bleeding disorder more effectively. Sessions will include: Listen To Your Art- an art therapy session geared to our group, Taking Care of You -learn how to handle the stress of your bleeding disorder and Finding Strength Through the Struggle, learn how to harness frustration and turn it into positive action. We will have other fun activities and a chance to connect with others in our community.
This retreat is Sponsored by an educational grant through Novo Nordisk.

Go to www.BDANENY.org for more information.

Spring Event
2017-04-23 11:00 - 14:00 (America/New_York) | Bronx Zoo, 2300 Southern Boulevard, Bronx, New York, 10460
This year, we’re returning to the Bronx Zoo Sunday, April 23, 2017 at 11:00am.
The event ticket includes access to the entire zoo; a delicious barbecue lunch including burgers, hot dogs, sides, and vegetarian options;
a wide range of rides and attractions; and more!
For details on how to register, visit: bit.ly/2017springevent.

NYCHC Chapter Kids Pool Party
2017-04-11 11:30 - 14:30 UTC | Dwight School Athletic Center, 2116 1st Avenue, New York, New York , 10029
NYCHC is having a Chapter Kids Pool Party this Spring Break!
This event will consist of:

1 hour of lifeguard-supervised swim instruction/play
1 hour pizza lunch and craft session
1 hour movie screening

This is a F R E E event, however, advanced registration is required. We are also asking that only kids ages 7-13 attend, as the activities will be age-specific. Please Note: We’re working on hosting more swim events for all ages for the summer, so be on the lookout for those announcements!
Please register by Monday, April 3, 2017 in order to attend.
Please contact Krystle at krystle.roberts@nyhemophilia.org or at (646)580-1096 for any questions or concerns.
