Peer-Led Holistic Support

Implements programs aimed at expanding health equity and improving access to care for individuals with genetic aortic and vascular conditions on a global scale.

Empowers individuals and supports healthcare providers through research on Marfan syndrome, Loeys-Dietz, Vascular Ehlers-Danlos, and related genetic aortic and vascular conditions to improve quality of life and longevity.

Links individuals and families to over 70 U.S. and global institutions with expertise in diagnosing and treating genetic aortic and vascular conditions.

Creates and provides easy-to-understand educational resources about Marfan syndrome and related conditions for patients, families, and healthcare providers.

Runs a Community Fundraising program and recruits volunteers for campaigns, event setup, outreach, social media advocacy, and content sharing to expand public awareness and support.

Hosts regular virtual support groups via Zoom, including specialized events like Teen Talk and Kids Club, to address specific concerns and build community among individuals and families affected by genetic aortic and vascular conditions.

Finances the creation of educational materials and resources through grant funding from external foundations such as the Chu and Chan Foundation.

Organizes an annual conference and full-day regional symposiums across the U.S. to provide medical education and foster community connection for individuals affected by Marfan, Loeys-Dietz, VEDS, and related conditions.

Provides medical and psychosocial information through a bilingual phone and email helpline, reaching approximately 5,000 people annually, supported by website content and educational webinars.

Provides safe, structured camping experiences for children and families affected by Marfan syndrome, Loeys-Dietz, VEDS, and related conditions to support typical summer experiences in a medically aware environment.

Coordinates events across the United States and online to raise public awareness and funds for genetic aortic and vascular conditions, including patient education and community engagement components.

Offers educational resources on the benefits of therapy and how it can help individuals manage chronic pain and emotional challenges associated with Marfan syndrome.

Provides education and support programs specifically designed to help teens affected by genetic aortic and vascular conditions transition from pediatric to adult healthcare systems.

Hosts annual multi-day patient advocacy events during ALS Awareness Month in May, where patients in electric wheelchairs or scooters travel a lengthy route to raise public awareness and funds; also conducted a historic 15-day wheelchair ride from Yankee Stadium to Washington in 1998 for the same purpose.

Conducts educational outreach programs in schools and communities to raise awareness about ALS and promote compassion, volunteerism, and public understanding of the disease.

Offers bereavement support groups for individuals who have lost a spouse or life partner to ALS, facilitated remotely via Zoom to enable broad participation.

Hosts annual benefit events such as the Honoree Recognition Benefit and the Tony Hendra ALS Ride For Life Bike Trek, and produces video recaps, photo galleries, and virtual journals to engage the community and promote awareness.

Provides up to 15 end-of-life doula support sessions per grant recipient through licensed practitioners to support ALS patients and their families during palliative stages.