National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases

You too can be as cool as Gene, our Annual Family Conference mascot, this summer by sporting a Day of Hope profile frame...
07/16/2025

You too can be as cool as Gene, our Annual Family Conference mascot, this summer by sporting a Day of Hope profile frame to celebrate our 15th Annual Day of Hope! Simply message us with the photo you'd like used in the Day of Hope frame and we’ll send back your official Day of Hope picture to use now through September! Share your photo and tag !

Help advocate, spread awareness, and raise critical funds for research and family services with a Day of Hope event, but purchasing a t-shirt, or making a donation at NTSAD.org.

Clinical trials are careful by design. They are often small and exclusive to ensure safety and accuracy, and slow becaus...
07/15/2025

Clinical trials are careful by design. They are often small and exclusive to ensure safety and accuracy, and slow because getting trustworthy results, as well as drug approval, takes time and care. Some of the factors involved in conducting a clinical trial include:

1. Safety First
New treatments can be risky, so trials start with small groups to test for safety and efficacy before moving on to larger groups.

2. Strict Eligibility Criteria
Trials usually only include people who fit narrow health profiles to reduce variability, protect vulnerable patients, and ensure clear results. This makes trials more controlled but also more exclusive. A small control panel means more accurate information with less variables at play.

3. Complex Regulations
Clinical trials must follow strict legal and ethical rules to protect participants. This includes: approval by ethics boards, detailed consent processes, and monitoring for side effects. These steps are essential and non-negotiable, but they slow things down, often more than we would like.

4. Need for Long-Term Data
Some treatments take months or years to show results. This adds more time to follow up, analyze, and to publish findings before a drug or treatment can be approved.

Learn more about the upcoming Azafaros NAVIGATE Phase 3 multi-national trial for GM1, Niemann-Pick Type C, Sandhoff, and...
07/14/2025

Learn more about the upcoming Azafaros NAVIGATE Phase 3 multi-national trial for GM1, Niemann-Pick Type C, Sandhoff, and Tay-Sachs with the Community Webiniar happening today.

Join the webinar here: https://us02web.zoom.us/j/87849124702

Be Rare Aware! Share the following infographics (by saving these photos or downloading the pdf versions at NTSAD.org) on...
07/09/2025

Be Rare Aware! Share the following infographics (by saving these photos or downloading the pdf versions at NTSAD.org) on your own social platforms, and with family and friends to quickly and easily give a snapshot of TaySachs, Canavan, GM1, or Sandhoff. You can utilize these one-pagers for your events, awareness campaigns, and save for the upcoming Leukodystrophy Awareness Month and Tay-Sachs and Sandhoff Awareness Month - all in September, coinciding with Day of Hope!

Our 15th Annual Day of Hope is coming up on September 20th. Why do we celebrate with this campaign every September, you ...
07/08/2025

Our 15th Annual Day of Hope is coming up on September 20th. Why do we celebrate with this campaign every September, you may ask? Well, it's a natural fit. Not only was NTSAD incorporated in September of 1957, making this our 68th anniversary, but September is also Leukodystrophy Awareness Month, and Tay-Sachs and Sandhoff Awareness Month as well!

Join the collective effort for our 15th Annual Day of Hope, from now through the fall to raise awareness and funds for critical research and family programming along with us. Purchase a t-shirt, make a donation, host and event, or Move a Mile to show you care for rare.

Learn more at NTSAD.org.

Please join us in welcoming to the NTSAD family our new Development Manager, Erin Demers! Erin brings a strong backgroun...
07/07/2025

Please join us in welcoming to the NTSAD family our new Development Manager, Erin Demers! Erin brings a strong background in non-profit fundraising, program strategy, and mission-driven communications, with experience spanning workforce development and education. She is passionate about building meaningful relationships, mobilizing resources, and creating lasting impact for the rare community. Erin is committed to compassion, connection, and equity and is excited to be joining us at NTSAD.

At NTSAD we know the enduring nature of love never ends, even in death. For parents navigating the loss of their child, ...
07/03/2025

At NTSAD we know the enduring nature of love never ends, even in death. For parents navigating the loss of their child, you are seen, and your grief is valid. Your child's life matters still. We remember. We are here for you, and we honor the love you continue to give each and every day.

The 15th Annual Day of Hope t-shirts are here! Get set to Move A Mile with us and show you care for rare with a Move A ...
07/02/2025

The 15th Annual Day of Hope t-shirts are here! Get set to Move A Mile with us and show you care for rare with a Move A Mile NTSAD branded tee...or create your own custom tee in honor or memory of your rare loved one with our ready-made templates. Add a name, choose your favorite styles and colors, and launch your own t-shirt fundraiser for NTSAD.

Be a part of the collective effort and Move A Mile (walk run, bike, swim, roll, and more) to show your support for Tay-Sachs, Canavan, GM1, and Sandhoff on September 20th!

Move A Mile Shirts:
https://tinyurl.com/y7hjpa7p

Customizable Shirts:
https://tinyurl.com/382ju7sf

🌟 Today marks the launch of our 15th Annual Day of Hope at NTSAD! 🌟Together, we honor the strength of families, remember...
07/01/2025

🌟 Today marks the launch of our 15th Annual Day of Hope at NTSAD! 🌟

Together, we honor the strength of families, remember our loved ones, and fuel the fight to find treatments for Tay-Sachs, Canavan, GM1, and Sandhoff diseases.
Join us during this season of hope, now through the official 15th Annual Day of Hope on September 20th, 2025 as we spread awareness, share stories, and show that hope lives here—in every step, every voice, every act of support. Move A Mile with us to support research and family support, because even small steps make a BIG IMPACT!

Learn more at NTSAD.org

Join us in giving a warm welcome to David Zanella as he joins the NTSAD Board of Directors. As David shares,"As a late ...
07/01/2025

Join us in giving a warm welcome to David Zanella as he joins the NTSAD Board of Directors. As David shares,

"As a late onset Sandhoff patient, I have formed close relationships with the other LOTSS individuals and families that I have met through NTSAD. My goal as a board member is to be a strong advocate for our community—addressing our unique needs and concerns and pushing for the development of mental health support for the late-onset group."

Join us in giving a warm welcome to Stefanie Solomon, Esq. as she joins the NTSAD Board of Directors. As Stefanie share...
07/01/2025

Join us in giving a warm welcome to Stefanie Solomon, Esq. as she joins the NTSAD Board of Directors. As Stefanie shares,

"I am honored to join the board of NTSAD and support its critical mission. It is a privilege to contribute to an organization with a longstanding history of serving patients and families with care and compassion. I look forward to applying my experience in health policy and patient access to help ensure that impacted families continue to receive the information and resources they urgently need."

Join us in giving a warm welcome to Colleen Pierce as she joins the NTSAD Board of Directors. As Colleen shares,"My pur...
07/01/2025

Join us in giving a warm welcome to Colleen Pierce as she joins the NTSAD Board of Directors. As Colleen shares,

"My purpose has always been to help people live their best lives — however that may look for them. I am honored to bring that purpose and passion to the NTSAD Board and to support its vital work on a deeper level."

Address

Brighton, MA

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+16172774463

Website

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