The 37th Annual National Tay-Sachs and Allied Diseases Association’s (NTSAD) Annual Family Conference occurred April 16-19, 2015 at the Hyatt Regency in Reston, Virginia and was a wonderfully supportive time of research, education, support and togetherness. This year there were a total of 280 attendees with 78 families present, one of our largest conferences ever! 44 of our 78 families attended on a Helping Hand grant with over $51,000 in grants being awarded.
Both Lynette Johnson and Sarah Mattingly of Soulumination were on site once again this year to take beautiful and meaningful photos of all of our families in attendance.
The commemoration Ceremony, Honoring Our Sweet Angels closed on a high note with families planting a “Love Garden” of pinwheel flowers with their loved ones’ names on them in the park across from the hotel. Our first ever t-shirt quilt raffle, two quilts made of the awareness t-shirts donated by our families raised over $1000, and both were won by families in attendance! The Members Meeting addressed the changes to the NTSAD bylaws and a vote was held to approve these changes. The new bylaws were passed unanimously (38-0) by those in attendance.
Two awards were given: “Power of One” to Oralea Marquardt for her dedication to continuing to serve the families NTSAD and honor her son, William, in her pursuit of awareness and education through her contributions to the development of a pediatric hospice in her area and her work with local hospice facilities as she pursues her MSW. And the “Above and Beyond,” to Michael Sussman for his continued and very generous support of NTSAD in honor of his parent, who with several other families started NTSAD back in their living room in the 1950’s. Michael’s moving acceptance speech touched the hearts of those in the room when he told how proud his parents would be to see those in attendance there that day and the work that they and all of NTSAD continues to do.
An NTSAD Scientific Symposium & Workshop was held the first day of the conference with over 40 doctors, researchers and clinicians attending to brainstorm, discuss, and share their collective efforts in finding a cure for these diseases for all of our families. The Research Update Session included talks on what’s new in carrier screening from Mimi Blitzer, PhD and board president Shari Ungerleider, the NTSAD funded project “Lectin –Assisted Transnasal Delivery of Corrective Enzyme for GM1 Gangliosidosis” by David Radin, PhD, Carole Cramer, PhD, and Alessandro d’Azo, PhD, Tay-Sahcs gene therapy with Doug Martin, PhD, and the importance of natural history studies with Gery Cox, MD, PhD, and Florian Eichler, MD.
New to the conference this year was our New Family Boot Camp for newly diagnosed, first-time attendees. In this small group setting our first time families were introduced to the idea of the conference and to sharing among the group itself. It was a safe and accepting environment where participants could openly ask questions and share their story while learning about basic genetics and medical terms, equipment and beginning the discussion of finding their philosophy of care for their child.
We also had 15 Late Onset Sandhoff and Tay-Sachs adults in attendance this year, our biggest group of Late Onset members yet! With a dynamic new program set up to bring exploratory research studies, discussions revolving around tackling the challenges of maintaining current abilities when coping with a progressive diagnosis, and the toll it takes not only on one’s physical health, but mental health as well, our LOTS group was quite busy over the weekend. All this and on Friday night they had their first ever group outing to see the sights in Washington, D.C..
All in all it was a wonderfully moving weekend full of the kind of support, education, and inspiration NTSAD is known for. And now, we count down the days until we see each other again at the 38th Annual Family Conference in Orlando, FL April 7-10, 2016!