Bleeding Disorders Conference Thank You Stakeholder Genentech Make A Will Month Field Day Red Tie Soiree In this Issue: Donor Digest BDC is Here! We are thrilled that NHF’s 2022 Bleeding Disorders Conference is coming up so soon! It will take place from August 25 to 27 in Houston, Texas. After two years of not being able to meet in person, we are looking forward more than ever to convening our community to explore important treatment and research developments in hemophilia, von Willebrand disease, and other inheritable bleeding disorders.
NHF
August 2022
The conference, the largest of its kind in the United States, will feature our high-caliber educational program for key members of the bleeding disorders community: consumers, chapter leaders, healthcare professionals, and industry. Our program tracks explore a variety of topics, ranging from navigating health insurance to mental health as well as tailored educational sessions for healthcare providers.
Spotlight:
Thanks to donors like YOU, families can now connect with other inheritable blood disorder families at BDC. As William’s mom said, “The conference allows us to have a human experience, we can connect with other people in the community, and we have the support of other people who experience inheritable bleeding disorders.”
Over the next few days whether you’re attending BDC in person or virtually you’ll witness NHF’s mission in action: finding cures for inheritable blood and bleeding disorders and addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. Make sure to tune into our social media channels to keep up to date with BDC. As a valued member of the NHF community, we wanted to say thanks. Your support means the world to those affected by inheritable blood disorders. Your partnership is key; thank you for your commitment to NHF’s mission. Your donations help NHF develop a national research agenda in partnership for the community to ensure that the voice of the people who are most affected by research – the patients and families remain at the center of scientific progress. We wish you health, happiness, and a great summer!
Challenge Accepted is a reality TV web series created by Genentech to tackle the unspoken issues of people living with hemophilia. The show follows a magician-comedian host, Justin Willman, as he dares members of the community to go outside their comfort zones and challenge the meaning of living with a bleeding disorder. Aided by coaches with a broad array of expertise, Justin helps members of the hemophilia community achieve their goals.
The goal of this episode is to focus on the importance of opening up, reaching out, and taking your mental health journey one quarter mile at a time.
Season 2 highlighted a variety of topics for the community, but the episode on mental health, Forward, is a particularly powerful one. It focuses on a father, Heber, and his struggles with mental health after an unthinkable accident in which he backed over his son, who has hemophilia, with his car. While the child made a full recovery, the emotional trauma rendered Heber unable to drive in reverse— a devastating effect for a man whose #1 passion in life was driving.
Challenge Accepted Season 2
To help, the team brought in Cody Ware, an internationally renowned racecar driver who suffers from PTSD, caused by a horrific bullying incident in his teenage years. Justin Willman brings levity, but ultimately takes a back seat, leaving Heber and Cody to discuss their shared pain and the impact it has had on their lives— years after their trauma.
The show, which can be seen on the Challenge Accepted Show YouTube channel, brings the Genentech approach to Supporting the Person to life on the small screen. Catch up on all of Season 1 and Season 2 at youtube.com/challengeacceptedshow.
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Make-A-Will
The above content was provided by Genentech as part of its NHF sponsorship. you know that August is a perfect opportunity to give back to NHF during National Make A Will Month?
FreeWill
you
More than 580,000 individuals across the country have already used this tool to plan their futures The inherited blood disorders community remains at the heart of everything we do, so I hope you take the time to safeguard what’s closest to your heart before August comes to an end. Click here for more information and to get started today. Month
Another notable episode from Season 2 was Familia, created for the Spanish-speaking hemophilia community. In our research, we spoke with members of this community to unearth which topics would be most relevant to their unique experience. Inevitably, the same theme came up in every single conversation: family. The episode highlights how a family’s genuine love for their son with hemophilia A sometimes manifests as overprotection.
Chuey Martinez, a beloved Mexican/Dominican comedian, helps tackle this issue as we hear two sides of this family’s story. Jefferson, a young man living with hemophilia, talks about moments his mother was overly protective, while his mother shares the fears that drive her to keep him safe at all times. Interspersed throughout are telenovela-style flashbacks that recreate moments of their lives in a lighthearted way, making them easier to talk about.
The episode is largely in Spanish with English subtitles to relate to both strictly Spanishspeaking households and bilingual families. In the end, the family learns that even with hemophilia, a little bit of extra independence can go a long way.
No matter where you are on your life’s journey, creating a will ensures that you can give back to your favorite organizations and build a legacy that advances missions care about. guides you through the process of making or updating a legally valid will in just 20 minutes for free.
NHF is excited eld Day event this September. The purpose of the event is to promote a safe, active lifestyle for people living with inheritable blood disorders while also educating the larger community about what it means to live with an inheritable blood disorder. We want people to know that our community members can still play and live just like anyone else. Individuals and families can participate from across the country and host their event anytime between September 15th and October 12th. There will be registration options for all ages including adults! After signing up, attendees will receive a customized field day box full of games and activities to play with your friends and family.
Visit hemophilia.org/fieldday to sign up and receive your custom field day box. We hope y
NHF would like to thank Takeda for their generosity sponsoring this initiative. The program was created to raise awareness of inheritable blood and bleeding disorders and foster dialogue about what it means to live with an inheritable blood disorder.
Save the Date: Giving Shoesday is November 29th!
NHF is thrilled to announce that Giving Shoesday is back! Join us in November for a fun-filled month of promotions. Make a gift to NHF and you’ll receive a pair of custom Converse or Nike sneakers, make especially for our community. Stay tuned! We have a brand new design coming out this November.
Inspiration Award
The Red Tie Soiree is the National Hemophilia Foundation's (NHF) signature fundraising gala. The event will take place on Saturday, October 15th at the Julia Morgan Ballroom in San Francisco, CA. This year, we are excited to honor 3 individuals who are longtime friends in our community and dedicated to improving the lives of those living with inheritable blood disorders. Meet this year’s honorees. Ambassador Award
To honor the legacy of her son, Karen Fulton Holine established the Jason Fulton Memorial Leadership Fund with the help of family friend Leah Ogden Adams. Despite complications associated with his severe hemophilia A diagnosis and treatment, Jason Fulton lived a full and meaningful life. This fund honors Jason's life and legacy by helping young adults in the community achieve their dreams. The Jason Fulton Memorial Leadership Fund benefits NHF's National Youth Leadership Institute (NYLI), a program designed to provide young people in the inheritable blood disorders community with leadership opportunities to inspire personal growth, effect change, and positively influence others. Jason's memory lives on in every NYLI member and each person they impact.
For more than 15 years, John Cunningham has served as CEO of the National AIDS Memorial. It is John's mission to honor all who lost their lives to the AIDS crisis, and those who are still impacted to this day. The AIDS and the inheritable blood disorders community share a common journey, and John works to forge the path towards healing and honoring those we lost. 2022 Awards
Featured Family Lucas and Maggie's son, Teddy, was diagnosed i h severe hemophilia A shortly after he was born o January 17, 2021. The Taylor's had no previous and had to learn what life was going to be like f son. They were introduced to NHF and their loc Hemophilia Treatment Center where they met o families who have young boys with hemophilia. Through these outlets, they knew they weren’t g have to face their diagnosis alone. There has been significant progress in treating hemophilia, but there is still no cure. A rallying f family and friends supports Teddy and everyon with inheritable blood disorders. The Taylor family is committed to raising funds and awareness for everyone living with a bleeding disorder. For example, in March of 2022, Maggie represented NHF alongside her mom, Jeanne in the United Airlines NYC Half Marathon and raised over $17,000 for the community and Teddy!
