NYC Hemophilia Chapter

NYCHC x Luna Park: Vol 2
2018-07-20 15:30 - 22:00 UTC | Luna Park, 1000 Surf Avenue, Brooklyn, New York, 11224
NYCHC is returning to Luna Park this summer!

Join us for a fun-filled day in Coney Island’s very own, Luna Park. First, teens will spend the afternoon completing challenges and exploring rides. Later in the evening, families are invited to watch the fireworks display with the Chapter. Meet us by the Carousel to get a good view!

2018 Inhibitor Retreat
2018-06-29 18:00 - 2018-06-30 15:00
Following the success of the 2017 Inhibitor Retreat, NYCHC once again presents this awesome opportunity for families and patients who struggle with inhibitors. The 2018 Inhibitor Retreat will feature opportunities to:

Access and discuss case studies of patients with inhibitors
Participate in peer-to-peer mentoring
Gain insights and medical expertise
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

This retreat will once again be free to participants who attend.
Stay tuned for more details about the retreat.

NYC Unite for Bleeding Disorders Walk
2018-06-03 | 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. The 2017 Walk raised over $401,000!
This year, under the new brand, Unite for Bleeding Disorders, the NYC Walk will be its biggest and best year yet! The 2018 Walk will once again be held in Riverside Park (enter at 103rd Street).
Register your Walk team today!

Spring Event - Innovation in Your World
2018-04-07 17:00 - 22:00 | Museum of the Moving Image, 36-01 35th Avenue, Astoria, New York, 11106
Spring Event is back and better than ever!

Every Spring Event is an opportunity to bring the bleeding disorders community together, engage in awesome activities, and have a great time. This year, NYCHC has stepped up the Spring Event game to give you all-access experience at the Museum of the Moving Image in Astoria!
This year, we’re exploring “innovation in your world”. We’ve got a great lineup of folks from all walks of life who take simple ideas, redefine limits, and provide new possibilities These change makers will inspire you to see the possibilities in your own world!
PLUS!

Early-birds who arrive at 5:00pm will get to explore the MoMI just as it’s closing to the public
All exhibits, games, interactive activities, and flip book machine are open exclusively to NYCHC community members
Food and drinks are included in admission
Infusion and product-related breakouts
And more!

Saturday, April 7
5:00PM – 10:00PM
Early access to exhibits: 5:00PM
General admission: 6:00PM
The Museum of the Moving Image
36-01 35th Street
Astoria, NY 11106
There is no cost for this event which is intended for families and individuals who are members of the NYC bleeding disorders community, or want to learn more about NYCHC. However, advanced reservations and tickets are required.
For questions or concerns, please contact Krystle Cheirs-Roberts at krystle.roberts@nyhemophilia.org.

This event is generously sponsored by Aptevo Therapeutics, Biomarin, Genentech, and Shire.

Factor 7 Retreat
2018-04-06 - 2018-04-08 | Marriott at City Center, 740 Town Center Drive, Newport News, VA, 23606, United States
Comprehensive Health Education Services and the LadyBugs Foundation teamed up in 2012 to present the only national program of its kind for those affected by FVII; funding by an education grant from Novo Nordisk.
Join us for our 7th annual weekend of education, support, and fun for those affected by FVII deficiency and their families.
The Factor 7 Retreat brings together individuals with factor 7 deficiency (FVIId) and
their immediate families for a weekend of education and community building. This
program offers topics critical to those who live with FVIId such as, bleeding tendencies,
movement and wellness, self-infusion, civil rights/504 plan, psychosocial aspects, and more.
Friday, April 6th-8th, 2018
Location: Marriott at City Center – Newport News, VA

Innovation Bootcamp 2.0
2018-03-24 11:00 - 14:00 | NYCHC Conference Room, 315 West 36th Street, 9th Floor, New York, New York, 10018
CALLING ALL DREAMERS AND BIG PICTURE STHINKERS! WE WANT YOU BACK!

INNOVATION BOOTCAMP 2.0 is COMING!
Join us for the second installation of interactive workshops about simple tools innovators use to unleash inner creativity and solve complex problems. At the first bootcamp, we learned how to address social problems using empathy. This second session will go deeper into empathy as a problem solving tool and create models for change.
This event is all ages, but registration is required for all participants. Lunch will be served. Seats are limited to 30 participants, priority will be given to those who attended the first innovation bootcamp.

Questions? Concerns? Can’t make it but want to know more? Email Jeremy Griffin at jeremy.griffin@nyhemophilia.org.

Ladies First! Friday Nights: Custom Leather Workshop + Happy Hour
2018-03-23 18:00 - 20:30 | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States
NYCHC’s Women’s Committee presents: Ladies First! Friday Nights

In this first installment of Ladies First! Friday Nights, NYCHC’s Women’s Committee has partnered with the awesome ladies at Craft Jam Inc. to bring you a Custom Leather Wallet Workshop + Happy Hour!
We’re celebrating Women’s History Month by celebrating ourselves!
Join us for 2.5 hours of:

cutting, assembling, and stamping leather wallets
delicious bites, beer, wine, and other refreshments
a supportive group of gal pals

This workshop and happy hour is F R E E and open to women in the bleeding disorders community (affected women, carriers, and caregivers). Activities are all ages, but you must be 21+ to consume alcohol. Spaces are limited.

For questions or concerns, please contact Krystle Cheirs-Roberts at krystle.roberts@nyhemophilia.org.

2018 Albany Days
2018-03-18 - 2018-03-19
As a member chapter of the New York State Bleeding Disorders Coalition, we unite with other chapters in Albany annually to advocate for the needs of the bleeding disorders community. Individuals and families are encouraged to participate in this legislative day.
Prior to the session, attendees receive training and become more familiar with speaking about the issues. They then meet with their legislators (or representatives) to express their views. Throughout the event, families learn more about the legislative process and meet other families navigating through the same health care issues.
Stay tuned for more information on how to register for Albany Days.

Christopher's Hemophilia Benefit
2018-03-16 19:30 - 2018-03-17 00:30 | The Coral House, 70 Milburn Avenue, Baldwin, New York, 11510

NHF Washington Days
2018-03-07 - 2018-03-09 | Hyatt Regency Washington on Capitol Hill, 400 New Jersey Ave NW, Washington, DC
The National Hemophilia Foundation (NHF) will host the annual Washington Days advocacy event March 7-9, 2018 on Capitol Hill in Washington, DC. NHF’s Washington Days is an opportunity for people affected by bleeding disorders to advocate for issues that are important to them. Last year’s Washington Days had more than 500 volunteer advocates from 47 states that met with legislators and staff to discuss maintaining key patient protections in the Affordable Care Act (ACA).
The hotel for 2018 Washington Days lodging and trainings will be the Hyatt Regency at Capitol Hill, 400 New Jersey Ave NW, Washington DC 20001.
For the 2018 Washington Days agenda, please click here.
To register for Washington Days click here.

If you seek financial assistance for Washington Days, please click here.

2018 Walk Kickoff Brunch
2018-03-04 09:00 - 12:00 | Bareburger, 535 LaGuardia Place, New York, NY
To jump start Walk season and celebrate Bleeding Disorders Awareness Month, we’re inviting all Walk Captains, walkers, and anyone else who wants to make the 2018 Walk bigger and better than the last to brunch! Sunday, March 4th, we want to celebrate with you at Bareburger!
The Hemophilia Walk has a new, more inclusive focus and name:
Unite for Bleeding Disorders Walk!

2018 VWD Retreat: Hope on the Horizon
2018-02-23 18:00 - 2018-02-24 15:00 | Courtyard by Marriott Central Park, 1717 Broadway, New York, New York, 10019
NYCHC invites you to the
2018 vWD Retreat: Hope on the Horizon!

This event is intended for individuals and families affected by VWD (von Willebrand Disease).
The program will feature opportunities to:

Get to know other community members affected by von Willebrand Disease
Participate in discussions with local clinicians and other experts
Learn about vWD on a national scope
Learn strategies for dealing with the day to day challenges of living with vWD
Share thoughts, experiences, and ideas for strengthening this community
and more!!!

REGISTRATION DEADLINE: FEBRUARY 16, 2018

Registration is limited to people with vWD and those in their immediate circle of care. This retreat is at no cost to families, however, all participants must be registered by Friday, February 16, 2018.

For any questions or concerns, please contact Krystle at krystle.roberts@nyhemophilia.org.

Kids Climbing Adventure
2018-02-11 10:45 - 13:30 | Brooklyn Boulders Queensbridge, 23-10 41st Street, Long Island City, New York
We’ve partnered with the team at Brooklyn Boulders-Queensbridge to bring kids a climbing adventure! Rock climbing is an excellent way to exercise joints, stay in shape, and challege yourself physically and mentally. With the safety of certified belay instructors, your kids will be able to climb their way up the walls and stretch their limits!
Plus for moms, we’ve got a Relax and Recharge session featuring aromatherapy, meditation, annd writing with poet Stephanie Alvarado!
This event will consist of:

15-minute training and safety session prior to climb
2 hours of climbing instruction with certified instructors
2 hour Relax and Recharge session for moms
Access to locker rooms
Post-climb snacks

This is a F R E E event, however, advanced registration is required. This event is open to kids ages 6-11 accompanied by their moms or female caregivers.
Please register by Thursday February 8, 2018 in order to attend.
Please contact Krystle at krystle.roberts@nyhemophilia.org or at (646)580-1096 for any questions or concerns.

Nos hemos asociado con el equipo de Brooklyn Boulders-Queensbridge para llevar a los niños a una aventura de escalada. La escalada en roca es una excelente manera de ejercitar las articulaciones, mantenerse en forma y desafiarse física y mentalmente. ¡Con la seguridad de los instructores de aseguramiento certificados, sus hijos podrán escalar por las paredes y estirar sus límites!
Además, para las madres, tenemos una sesión de relajación y recarga que incluye aromaterapia, meditación y escritura con la poeta Stephanie Alvarado.
Este evento consistirá en:

Entrenamiento de 15 minutos y sesión de seguridad antes de subir
2 horas de instrucción de escalada con instructores certificados
2 horas de sesión de relajación y recarga para mamás
Acceso a los vestuarios
Refrigerios post-escalada

Este es un evento G R A T I S, sin embargo, se requiere un registro avanzado. Este evento está abierto para niños de 6 a 11 años acompañados por sus madres o cuidadores mujeres.
Por favor regístrese antes del jueves 8 de febrero de 2018 para asistir.
Comuníquese con Krystle a krystle.roberts@nyhemophilia.org o al (646)580-1096 si tiene preguntas o inquietudes.

Innovation Bootcamp
2018-01-23 18:00 - 20:00
Calling all DREAMERS and BIG PICTURE THINKERS!
Innovation Bootcamp starts
JANUARY 23, 2018!

Join us for an interactive workshop about simple tools innovators use to unleash inner creativity and solve complex problems. At this ALL-AGES workshop, we’ll form teams and apply these tools to design solutions for key challenges within the bleeding disorders community.
This event is all ages, but registration is required for all participants. Pizza and drinks will be served.

Questions? Concerns? Can’t make it but want to know more? Email Jeremy Griffin at jeremy.griffin@nyhemophilia.org.

NHF's 70th Annual Meeting
2018-01-02 08:00 - 17:00
NHF’s 70th Annual Meeting will be held in Orlando, FL on October 11-13, 2018. Registration for Annual Meeting will open on February 1, 2018.
Check back for registration details and more information.

Picnic de Verano
2018-01-02 08:00 - 17:00 | 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 5 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 5th 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!

2017 Education Day
2017-11-19 09:00 - 17:00 | NY Marriott Marquis, 1535 Broadway, New York, NY, 10035, United States
Tis the season for learning and festivities with NYCHC! Join us at our 2017 Education Day and Holiday Party!

Featuring:
Adult Sessions in English and Spanish on:
++ advocacy and healthcare updates
++ pain management
++ women with bleeding disorders
++ inhibitors
++ aging with a bleeding disorder
++ clinical trials and new treatments
Teen Sessions & Escape Room Offsite Trip
Childcare and Sessions for Kids
Surprise Guest Speakers
++ AND MORE ++
!!!PLUS!!!
Wellness Lounge featuring: yoga, meditation, massage, aromatherapy, and more
Special appearances at the Holiday Party by: Santa and his elves, the Photo Booth Fella team, and DJ Omar “Papo”

2017 Gala
2017-11-18 17:00 - 22:00 | JW Marriott Essex House, 160 Central Park South, New York, NY, United States
The 2017 Gala is an experience not to be missed!

This year, the NYCHC Gala will be held at the JW Marriott Essex House’s Grand Salon. The historic art deco building is on Central Park South and is one of the most elegant buildings in New York City!
This year, we are honoring Bradley Shoenfeld with the 2017 Award of Distinction and Aliana Soto with the Susan Galligan Volunteer of the Year Award. Both of our honorees have contributed so much to the bleeding disorders community and to NYCHC in particular with regards to Board leadership, fundraising through the Walk, and sharing their stories and families with us.
We hope that you join us for a night of dinner, dancing, raffles, and honoring our wonderful community members!

Parenting with a Chronic Condition (Bioverativ)
2017-11-08 18:30 - 20:30 | F & J Pine, 1913 Bronxdale Avenue, Bronx, NY, 10462, United States
Whether we like it or not, uncertainty can be a part of life when it comes to living with a chronic condition.

For parents with bleeding disorders, there are unique challenges that can directly impact family life. These parents may have a lot of questions, such as: How do I talk to my kids about my condition? Is my partner feeling overwhelmed? What if a bleed interferes with our daily routine? We developed this program so that parents—and expecting parents—could have an open forum to talk about the issues they face, in a supportive and encouraging environment.
This dinner and program have been generously sponsored by Bioverativ.
Nearest MTA Subway stop: Morris Park 5 train; Bronx Park East 2/5 trains
Nearest MTA Bus Stop: Morris Park/Delancy Pl Bx21 or BxM10

Fall Family Cruise
2017-11-05 11:00 - 15:00 | Pier 61, New York, NY, United States
NYCHC and the VWD Committee bring you another awesome
Fall Family Cruise! This year our Inhibitor Committee is joining in on the fun. Join us on the Hudson River for family fun, food, and amazing views!

Tickets are $35 (retail value $70) – Ages 13+; Kids 12 and Under: $15
Tickets will be sold on a first come, first served basis as tickets are limited. Priority given to VWD and Inhibitor families. In the event that tickets are sold out, you will be added to the waitlist and contacted as spots open up.
We’ll meet at the Spirit Cruise kiosk at 11:00am. The cruise will leave from Pier 61 at 11:30am, so don’t miss the boat!
Tickets include:

2-hour cruise on the Hudson and East Rivers
Sweet and savory brunch buffet
Unlimited coffee, tea, & water
Views of the Manhattan and Brooklyn skylines
DJ Dance party

Chelsea Piers Directions
From Westchester

Take Saw Mill Parkway south to West Side Highway.
Continue south to 23rd Street.
Bear right at the Chelsea Piers signs and proceed to Pier 61, Chelsea Piers.

From Long Island

Take Long Island Expressway to Midtown Tunnel.
Out of tunnel, go left for two blocks to 34th Street.
Go right on 34th to 11th Avenue.
Turn left on 11th Avenue and continue to 24th Street.
Turn right and proceed for one block.
Turn left onto the West Side Highway and continue for one block.
Bear right at the Chelsea Piers sign and proceed toward Pier 61, Chelsea Piers.

From the Holland Tunnel

Take Holland Tunnel to West Side Highway North.
From the West Side Highway bear right onto 11th Ave and continue for two blocks.
Turn left onto 24th street and continue for one block.
Turn left onto the West Side Highway and proceed for one block.
Bear right at the Chelsea Piers sign and proceed toward Pier 61.

From the Lincoln Tunnel

When exiting the tunnel, follow signs to West Side Highway South.
Continue south to 23rd Street.
Bear right at the Chelsea Piers sign and proceed to Pier 61, Chelsea Piers.

Via Bus

Take north/south route to 23rd Street.
Take the #23 bus west to Chelsea Piers (last stop) and walk to
Pier 61.

Via Subway

Take C, E, 1, N, M, F, R, or 6 to 23rd Street.
Take the #23 bus west to Chelsea Piers (last stop) and walk to
Pier 61.

For parking information visit: https://www.chelseapiers.com/also/parking/

Cracking the Code (Bioverativ)
2017-10-25 18:30 - 20:00 | 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 | 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 | 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 | 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 | Monahan and Fitzgerald’s, 21417 41st Avenue, Bayside, New York, 11361

NYCHC Open House
2017-10-03 18:00 - 20:00 | 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 | 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 | 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 | 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 | 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.
