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Hello Friend -
As we welcome the arrival of spring—a season that brings a sense of renewal and forward momentum—we are reminded of the strength and resilience that define our rare disease community. For those observing Passover or celebrating Easter in the weeks ahead, we wish you meaningful moments with your loved ones.
I am pleased to share that we recently welcomed a new member to the NTSAD team, part-time Development Assistant Adrienne “Adie” Woolf, who joined us in late March following Angela Papierski’s relocation to New Mexico. We are grateful to Angela for her contributions and excited for the energy and dedication Adie brings to NTSAD.
Looking ahead, we are actively preparing for the most meaningful event of the year for our community—our Annual Family Conference. We eagerly anticipate gathering with members of our community later this month and extend our sincere appreciation to our Family Services team, Becky and Diana, who plan the conference each year, and to all who will be contributing their time and expertise during Research Day, Health & Symptom Management Sessions, as well as various educational and support group sessions.
We look forward to seeing many of you in Reston soon.
| | AAV9 Gene Therapy in Type II GM1 Gangliosidosis - A Phase 1-2 Trial | | NTSAD Research Data Collection - We Need Your Help! | | |
In our continued efforts to drive research, we need to gather data to better inform our discussions with researchers, drug developers, and regulators.
If you or your child is living with Tay-Sachs, Canavan, GM1, or Sandhoff disease, please take a few minutes to complete the NTSAD Research Data Collection Form below today.
(The information collected will not be shared outside of NTSAD unless you are interested in participating in future research opportunities and give your consent at that time.)
We are truly grateful for your time and your voice in moving research forward. To participate, please follow the link below.
Date Collection Form
| | Supporting NTSAD: Gifts, Grants, and Opportunities | | Interested in Fundraising? | | |
Our community inspires us with meaningful and heartfelt ways to honor your loved ones throughout the year. Whether you’re a seasoned fundraiser or not sure where to get started, we've created a NTSAD Fundraising Toolkit to support you!
If you’re thinking about a birthday or anniversary fundraiser, community event, or a Day of Hope activity, this toolkit includes tips, ideas, and inspiration from other families' fundraisers in all shapes and sizes.
View the full Fundraising Toolkit here.
If you have any questions or want to talk through an idea, reach out to NTSAD’s Development Manager, Erin at edemers@ntsad.org. Or, if you’re attending our upcoming Annual Family Conference, stop by the “Get Involved: Advocacy & Fundraising Session” to meet Erin and learn more about how you can fundraise on behalf of NTSAD in a way that’s manageable and meaningful to you!
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The #RAREis Scholarship Fund is now accepting applications. This year, 58 scholarships of $5,000 will be awarded to individuals living with a rare disease.
The scholarship is open to individuals ages 17 and older in the United States who are enrolling in college, graduate school, or a trade program for Fall 2026.This year marks a major milestone as the program will surpass 500 scholarships awarded since 2020, supporting individuals as they pursue their education and career goals.
Learn more and apply by April 28 at 2 PM ET at RareScholarship.org
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Meet NTSAD's Newest Team Member: Adie Woolf!
Please join us in welcoming Adie to the NTSAD team as our new Development Assistant!
With interests in building change through data and creating a positive impact for the rare disease community, Adie is thrilled to be working as NTSAD’s Development Assistant! Adie has a BA in English and Studio Art, as well as experience working in development at another nonprofit.
Feel free to reach out and welcome Adie at awoolf@ntsad.org.
| | Family Support: 48th Annual Family Conference | | The Last Day to Register and Reserve Your Hotel Room for the Annual Family Conference is April 8! | | |
NTSAD's 48th Annual Family Conference will be held in Reston, VA, at the Hyatt Regency Reston, from April 30 to May 3.
Join the NTSAD community for three full days of Support, Research Updates, and Health & Symptom Management programming, along with opportunities to connect and socialize with other individuals and families in a connective, warm, and welcoming environment.
For more information, visit the Conference event page on the NTSAD website at: https://ntsad.org/events/annual-family-conference/ or contact Becky at becky@ntsad.org.
The NTSAD Group Hotel Block is nearly full! Reserve your room ASAP!
Attendees must reserve their rooms using a personal credit card. The discounted conference room rate ($225/night for one standard room) is available from April 27 to May 6. Attendees requiring an ADA-accessible or roll-in shower room must reserve their room first and then let Becky know that they need an ADA-accessible room.
Room reservations can be made here: NTSAD Room Block.
Register to attend the conference here: Conference Registration.
| | 2026 Annual Family Conference Sessions: Schedule Overview* | | |
Thursday 4/30 - Support Day
- New Attendee Orientation
- Support Groups for Parents, Late Onset, Youth Group
- Welcome Dinner
Friday 5/1 - Research Day
- NTSAD Research Update
- Presentations and Panel Discussion: The Research Process, Therapeutic Approaches, and Clinical Trial Criteria
- Research Breakouts by Disease/Onset
- Get Involved: Advocacy and Fundraising
- Quiet Reflection and Commemoration
- Totally Rad 80s Glow Party!
Saturday 5/2 - Health Management Day
- Health and Symptom Management for Affected Children - Main Session and Breakouts
- Living with Loss for Bereaved Parents
- Late Onset Movement and Mobility
- Awards Luncheon
- Men's and Women's Groups
- Late Onset Q&A and Support for Caregivers Groups
- Parent Peer Group - Divided Discussion for those Caring for Additional Children and those Who Are Not
- Celebration Dinner
Sunday 5/3 - Until Next Year
- Until Next Year...Brunch!
*Schedule is subject to change without notice
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FREE Photography Sessions at the Annual Family Conference!
Thanks to the generosity of our wonderful photographers Sarah Mattingly and Joshua Roberts who will be with us this year to offer free photography sessions to our affected families and individuals.
Photography sessions are available to all affected families (both those caring for a loved one as well as those who are bereaved) and all affected adults. See the photography schedule and sign up for a time slot during the Annual Family Conference, at the link below.
Photography Session Sign Up Form
| | Join the All-Conference Zoom on April 8 | | |
We invite all conference attendees to join NTSAD staff, board, and volunteers on Wednesday, April 8 at 7:00pm ET for an All-Conference Zoom meeting. We’ll answer your questions, go over the conference schedule, and spend some time connecting before we meet in person at the 48th Annual Family Conference in Reston, VA!
Register here to join us!
| | Support Camps Snuggle and Active from Afar! | | |
A special message from our Camps Snuggle and Active directors: "Every year our NTSAD Family Conference comes together to support, educate, and empower families from around the world. As families are attending sessions, affected children are invited to join us in Camp Snuggle and Camp Active. Please consider helping us stock our supplies as we prepare for a memorable weekend in camp! A very special Thank-you to those who contribute!" You can support Camps Snuggle and Active by ordering from the wish list linked below.
Camps Snuggle and Active Amazon Wish List
| | Meet Michael and Phil, "Sandhoff Brothers" | | |
When Phil Rhodes recently embarked on a trip to New Zealand with his daughter, they saw more than just the stunning landscape. For Phil, it was a chance to meet a long-time friend in person for the first time.
As Michael shares, “After six years of online friendship through NTSAD, Phil (my Sandhoff brother) and I finally caught up in Auckland to share a lager. There’s not a lot to celebrate with a rare disease, but we can celebrate a friendship that spans over 8,600 miles through our common diagnosis and friendship through NTSAD.”
Phil added, “My friendship with Michael is a rare and valuable one, brought about by NTSAD and our shared experience with Sandhoff disease. Meeting Michael and his partner Lisa halfway around the world has been a truly unforgettable experience."
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Staff
Kathy Flynn, CEO
Becky Benson, Family Support & Engagement Manager
Erin Demers, Development Manager
Valerie Greger, PhD, Research Director
Diana Jussila, Director of Family Services
Cynthia Perreault-Micale, PhD, Research Manager
Adie Woolf, Development Assistant
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