Community News

More than 300 people, including 74 families, gathered for the 46th Annual Family Conference in Chicago from April 11 to 14. Rare children, adults, and their families travelled from across the United States from Alaska to North Carolina and internationally from Argentina, Canada, Chile, Denmark, Israel, Mexico, and Slovakia to attend the four-day event, along with clinicians, researchers, and members of industry.

As one attendee shared, “You all prepared this conference with the magic ingredient: Love! And it was noticeable in the atmosphere of the conference. I feel blessed I could attend.”

On Thursday, rare adults and families participated in support sessions, including 17 people in attendance for the first time, and five families who primarily speak Spanish. A huge thank you to interpreter Anabella Roman, who generously volunteered her time and expertise.

On Friday’s Research Day, NTSAD CEO Kathy Flynn and Research Director Valerie Greger, PhD, gave an overview of NTSAD’s research priorities and recent investments. Then, former NTSAD Executive Director Sue Kahn moderated the “Ask the Industry Expert” panel who discussed the current climate in research and drug development for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. Panelists included: David Rintell, EdD, of Aspa Therapeutics; Gisela Linthorst of Azafaros; Taylor Fields of IntraBio; Mathias Schmidt, PD, PhD, of JCR USA; Olga Flamini, MD, PhD of Myrtelle; and Cristina Cardoso of Sanofi.

On Friday afternoon our community gathered to support more than 50 bereaved individuals and families as they honored their loved ones. We said their names, lit candles, and created beautiful bouquets of tulips, which symbolize perfect love. Thanks to rare moms Monica Gettleman, Bonnie Davis, Amber Franzen, and Becky Benson for planning the thoughtful tribute.

On Friday, 15 members of the Late Onset group enjoyed a bus tour into Chicago and stopped at Navy Pier. Throughout the weekend, loving professional care was provided to 26 rare children by incredible Camp Snuggle and Camp Active volunteers. Special thanks to Holly Stringer, Caitrin Alexander, and Karen Horton for making these camp experiences possible as well as fun for our medically fragile, little ones and giving parents respite so they could attend sessions.

Our youth group, consisting of 15 super siblings ages 11-17, enjoyed field trips to Wrigley Field, the Bean, Navy Pier, the Shedd Aquarium, and the Field Museum over the weekend. Thanks to our volunteer chaperones Loren Benson, Craig Franzen, and Rod Marquardt. Our younger group of 20 super siblings also had a blast at Camp Sunshine, organized by KiddieCorp. Special thanks to Rare Dad Rudy Suarez for securing personalized surprises for all the kids.

On Saturday evening, Crystal Villalobos and Dan Greenberg were recognized for their efforts to spread awareness, advocate for rare, and advance research. Photographers Sarah Mattingly and Jamie Carpenter (from Living in the Light) gave 43 families and adults professional portraits. Local firefighters took photos with the children, and GeneOften referred to as the "unit of heredity." A gene is composed of a sequence of DNA required to produce a functional protein. More the therapy dog also made a return visit. We ended the day cheering for all the children as they paraded through the hotel leading everyone into dinner.

Thank you to all who attended and supported the Conference. We greatly appreciate our 2024 sponsors and donors, who made the conference experience possible, including providing 51 Helping Hand grants to families.

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