The National Tay-Sachs and Allied Diseases Conference Supports Families

April 15, 2013

The National Tay-Sachs and Allied Diseases Conference took place just last week on April 4th-7th.

Susan Kahn, the organization’s executive director had this to say on the event’s success:

“It was an amazing weekend for all Annual Family Conference attendees– from longtime members to newly diagnosed. They experienced firsthand the importance of having NTSAD in their lives. NTSAD’s commitment to leading the fight in research is linked and goes hand-in-hand with our commitment to family support. In addition to looking to NTSAD for community and emotional support, our families depend on us to provide resources, leadership, and the belief that one day we will find treatments and even a cure.”

For over 55 years, The NTSAD Organization has thrived and supported the community. This year, Global Genes was able to visit what is the cornerstone of their exceptional Family Support Services, the NTSAD Conference.

It provides over 200 parents, grandparents, affected children, healthy siblings, affected adults and their families the unique opportunity to: gather with people that truly understand; learn about latest research and symptom management approaches; and discuss other important topics. The primary goals of the conference are to empower, support and connect families coping with Tay-Sachs, Canavan, GM-1 or Sandhoff. These diseases are always fatal in children and extremely debilitating in adults. The Annual Family Conference directly achieves their mission to support affected families and individuals in leading fuller lives.

Another important goal of the conference is to ensure every family is able to attend the conference especially those who cannot afford it. This is achieved through the Helping Hand Grant Program. Each year approximately $40K is raised through donations and grants. Every dollar raised is awarded directly to families in-need to help cover the expense of attending. Scholarships range in size from covering one night at the hotel to covering hotel, registration and travel expenses for the entire family. Each grant application is considered on an individual basis and priority is given to newly diagnosed families, families that have not attended before and families that have lost their loved one in the past year.

Other examples of the powerful impact of the conference include parents donating equipment their child no longer needs to other families, the strong bonds and friendships formed over just a few days, and incredible sense of hope and empowerment that comes from attending the conference.

One attendee shared this beautiful sentiment after attending her first conference:

You don’t know true grace until you meet a mother holding her dying child in her arms reaching out to you, a total stranger, with love and compassion. I will never be the same.

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