𝗜 𝗮𝗺 𝗱𝗲𝗲𝗽𝗹𝘆 𝗵𝗼𝗻𝗼𝗿𝗲𝗱 𝘁𝗼 𝗮𝗻𝗻𝗼𝘂𝗻𝗰𝗲 𝘁𝗵𝗮𝘁 𝗜 𝗵𝗮𝘃𝗲 𝗯𝗲𝗲𝗻 𝗲𝗹𝗲𝗰𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝗕𝗼𝗮𝗿𝗱 𝗼𝗳 𝘁𝗵𝗲 EBF3 HADDS Foundation When my daughter was diagnosed with 𝗘𝗕𝗙3 𝗛𝗔𝗗𝗗𝗦, our lives took an unexpected turn. Navigating the complexities of this rare genetic disorder has been both challenging and informative. Throughout this journey, my passion for raising awareness and helping other families facing similar challenges has grown immensely—it has become my legacy. I want to extend my heartfelt gratitude to the EBF3 HADDS Foundation Board for trusting me to contribute to the incredible work they've already accomplished. The EBF3 HADDS Foundation has been a beacon of hope, providing invaluable resources, support, and advocacy for those affected by this condition. As a Board member, I am excited to: • 𝗔𝗱𝘃𝗮𝗻𝗰𝗲 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵: Support initiatives that fund groundbreaking research aimed at better understanding EBF3 HADDS and developing effective treatments. • 𝗘𝗻𝗵𝗮𝗻𝗰𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀: Create programs and campaigns to educate the public and healthcare professionals about HADDS, ensuring earlier diagnoses and interventions. • 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵𝗲𝗻 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗦𝘂𝗽𝗽𝗼𝗿𝘁: Build a strong network where families can connect, share experiences, and access essential resources. This is more than a role—it's a commitment to making a meaningful impact in our community. I believe that together, we can amplify our efforts to bring hope and support to all those affected by HADDS. 𝗜 𝗶𝗻𝘃𝗶𝘁𝗲 𝘆𝗼𝘂 𝘁𝗼 𝗷𝗼𝗶𝗻 𝘂𝘀 𝗶𝗻 𝘁𝗵𝗶𝘀 𝗺𝗶𝘀𝘀𝗶𝗼𝗻. Your involvement, whether it's sharing this message, participating in our events, or simply educating yourself about EBF3 HADDS, is crucial. Every action you take makes a significant difference and is deeply appreciated. To the EBF3 HADDS Foundation Board, your dedication to this cause is truly inspiring, and I am grateful to each and every one of you. #HADDSFoundation #EBF3HADDS #EBF3 #Hypotonia #Ataxia #RareDiseaseAwareness #RareDisease #CommunitySupport #Advocacy #GeneticDisorders #Genetics #Science #DNA #Research #Genes #Health #Scientist #Gene #Genomics #RareCare
We are excited to welcome new Board Members James Amos, Hannah Childers, Jon Dirnbeck, Chris Headings and Julia Quam to the EBF3 HADDS Foundation! Returning Board Members include Lindsay Marshall, Mallory Schindler, Dave Schindler and Fernanda Touso. Our sincere thanks to Ivette Matias-Sepersaude, Melissa Slick, and Lauren Lynch who have recently completed their terms. Thank you to all Board Members and volunteers, past and present, for offering your time and talents to the EBF3 HADDS Foundation. https://lnkd.in/gdNCgEhe #HADDSFoundation #EBF3HADDS
Many Blessings brother 🙏🙏
Congratulations Chris!
Congrats Chris!
Congrats Chris!
Congrats Chris!
Congrats Chris!
PVBLIC Foundation | United Nations Fashion and Lifestyle Network | Fashion Impact Fund
2moThank you Chris for all that you do!