US Tax Deductible EIN: 26-0256621

- (562) 212-1071

- 2409 E. Luke Avenue Phoenix AZ 85016

US Tax Deductible EIN: 26-0256621

- (562) 212-1071

- 2409 E. Luke Avenue Phoenix AZ 85016

Our Mission

The Cure Tay-Sachs Foundation is dedicated to funding the on-going research needed to find treatments and a cure for Tay-Sachs Disease.

Once the cure for Tay-Sachs has been found - and we will find it! - we will dedicate our efforts to promoting carrier-testing and Tay-Sachs awareness initiatives.

To begin the journey into Tay-Sachs Awareness, click here.

What is a Clinical Trial???

Keep up to date with the three leading research organizations:

Sio Gene Therapies: www.siogtx.com

Intrabio: www.intrabio.com

Taysha Gene Therapies: www.tayshaGTX.com

GRANT ANNOUNCEMENT!!!!

The CTSF is very pleased to announce our latest grant in support of future clinical trials for Tay-Sachs and Sandhoff disease. This is your donation money at work!!

The CTSF proudly awards the labs of Queens University in Ontario, Canada $154,660 USD. This money will support and pay for the already initiated work to best understand the methodology and volume of Vector (medicine) to administer to children Intrathecally. This work is part of the complicated journey leading to the safe administration of gene therapy to children.

We will keep you posted on the progress on this work right here.

Donations to the CTSF are fully tax deductible and can be made in any amount by credit card at: www.curetay-sachs.org

Thank you for your continuing interest in FINDING THE CURE!!!!!

Dear Tay Sachs and Sandhoff patient communities,

On behalf of Sio Gene Therapies, it is our privilege to share an exciting update. Today, we are delighted to announce that the first patient has been dosed in a Phase 1/2 trial evaluating AXO-AAV-GM2, an investigational gene therapy for the treatment of GM2 gangliosidosis, also known as Tay-Sachs or Sandhoff Disease.

The two-part AXO-AAV-GM2 study consists of (1) a dose ranging cohort evaluating the safety and efficacy of various doses of the gene therapy, followed by (2) a confirmatory cohort treated with the optimal dose identified from the dose ranging cohort. Both infantile and juvenile patients with GM2 gangliosidosis will be enrolled in the study which is being conducted in partnership between the University of Massachusetts Medical School and Massachusetts General Hospital (MGH)under the direction of Dr. Terence Flotte and Dr. Florian Eichler respectively, who work together to provide the treatment and follow-up of the patients enrolled in the study.

Information about the study, including inclusion/exclusion criteria, are posted on clinicaltrials.gov (NCT04669535): A Dose-escalation and Safety & Efficacy Study of AXO-AAV-GM2 in Tay-Sachs or Sandhoff Disease - Full Text View - ClinicalTrials.gov. As with all clinical trials, enrollment is dependent upon the study investigator's medical assessment of the patient meeting the inclusion criteria for the study, and as such, Sio will play no role in the selection of patients for the trial. A few of the criteria are listed below:

  • Must have a genetically confirmed diagnosis of Tay Sachs Disease or Sandhoff disease
  • Age at the time of gene transfer is 2-12 years for juvenile-onset patients and 6-20 months for infantile-onset patients
  • There are also factors assessed by the study investigator that will impact whether your child is eligible for the trial such as disease severity, surgical readiness for the gene transfer route of administration, and medical conditions that could interfere with conduct of the study or assessments

As always, your treating physician will serve as the best source of information for ongoing medical treatment and management of your child's disease. To learn more about this study, you or your doctor may contact the Clinical Research Coordinator at MGH, Haley Andonian(handonian@partners.org).

This is an important milestone for the entire GM2 community made possible by the many families, researchers and patient organizations committed to finding new treatments for Tay-Sachs and Sandhoff disease, and we look forward to enrollment of additional patients in this program. If you would like to reach out directly with any questions or feedback, you can contact us at patients@siogtx.com.

Sincerely,

Gavin Corcoran, MD

Chief R&D Officer

Erika De Boever

VP, Clinical Development

Cure Tay-Sachs Foundation

The Cure Is Within Reach!

Since our creation in June 2007, the CTSF has raised $4,995,464 from thousands of kind and generous donors. We have issued research grants to 9 researchers/laboratories around the world, and made impressive progress towards our ultimate goal... The Cure!

There is HOPE in your HELP!!!

Donate Now

2021 Donor Recognition

CURE Level: $5,000+ Donation - Delta Dental Community Care Foundation, Take a Hike Tay-Sachs 2021, Taysha Gene Therapies *** Research PhD: $1,000 to $4,999 Donation - Holly McDonald, Johnathan Rabinowitz, Lori Combs, Nu-Di Corporation, Race Roster *** Research: $500 to $999 Donation - Eugene Morris, FACEBOOK DONORS, HMI Industries, Sabrina Hiltunen, United Way - Lorain Ohio *** Treatment Provider: $250 to $499 Donation - Blackbaud Giving Fund, Bright Funds, Christina Juhasz, FACEBOOK DONORS, June and Karl Reidel, Lisa Nielson Laptalo, DMD, Liz Puckett, United Way - Lorain Ohio *** Symptom Manager: $101 to $249 Donation - Amazon Smile, Benevity Fund, Charity Aid Foundation - State Farm Employees, George and Gloria Crenshaw, Gloria Nelson, Gregory Scheurich, Julie Rabinowitz, L.I.J. Ladies, Roger May, Santhosh Manayilakath, Thrivent *** Jacob Sheep Parent: $100 Donation - Anita Sethi, Atlanta Jewish Federation, Bill Pigula, Charity Aid Foundation - State Farm Employees, Crispino Pastore, Greg and Yvonne Alburtus, Jane Dorothy Perlmutter Foundation, Joann Combs, Michael Goldberg, Monica Minter, Pat and Ralph Martz, Patricia Beaudry, Scott Cameron, Thomas Freese, Whalin Harter-Leahy *** Care Provider: $1 to $99 Donation - Alexander Turner, American Express Foundation, Angie Kinzinger, Ann and Frederic Seplow, Benevity Fund, Brad Devine, David Shumsky, Deborah Marnien, Dylan Baijnauth, Elizabeth Masiero, Erika Sauseda, Helen Rheingold, Jane Vaquez, Jazzylynn Miller, Jill Sadowsky, Joseph Reising, Karen Weissberg, Kashif Zahoor, Marion Conti, Megan Zinser, Meghan Granger, Michael Stamey, Michelle Storto, Network for Good, Nicole Minichiello, Richard and Maureen Bihn, Sagar Mehta, Sarah Mattingly, Stephanie Gelber, Tara Keefner, United Way Central CA., Vish Nadaarajah ***

Click here to view Donor List

Donate In Honor or Memory Of: (click on button(s))

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Tay-Sachs disease is caused by the absence or insufficient level of a vital enzyme called Hexosaminidase A (Hex-A). Without Hex-A, a fatty substance or lipid called GM2 ganglioside accumulates abnormally in cells, especially in the nerve cells of the brain. This ongoing accumulation, also called substrate, causes progressive damage to the cells. In Classic Infantile the destructive process begins in the fetus early in pregnancy, although the disease is not clinically apparent (symptoms do not start) until the child is several months old. By the time a child with Tay-Sachs disease is three or four-years old, the nervous system is so badly affected that life itself cannot be supported. Even with the best of care, all children with classic Tay-Sachs disease die early in childhood, usually by the age of 5, although some do live longer.

How do set up a free Facebook Fundraiser?

Many of you have asked how to set up a FB Fundraiser.... here ya go. You can create fundraisers for charitable organizations and personal causes on Facebook for Birthdays, Anniversary's, or any occasion!

To create a fundraiser for the CTSF: (no cost to you!)

1.  Click Fundraisers in the left menu of your News Feed

2.  Click Raise Money...

3.  Select Nonprofit/Charity (Cure Tay-Sachs Foundation)

4.  Select a charitable organization, choose a cover photo and fill in the fundraiser details

5.  Click Create

IT'S FREE, IT'S FUN, AND ALL $$$ GOES TOWARDS RESEARCH

Family Stories

Nikko's Story

Nikko was born on May 14 2015 and he is our firstborn son. Nikko since day one I always knew as his mother that he was angelic and filled a room with so much love with just his presence. What I didn't know was Nikko would be

Brennan's Story

Words cannot express what a privilege it was to be Brennan's parents. The Lord chose us to care for this precious child and now he is home. Brennan passed on March 4, 2016, in the comfort of his own home. It was fairly sudden and our hearts are broken. Brennan's parents, Holly and Royce Stringer, reside in Prescott, Arizona.

Alyssa's Story

Alyssa Tyner was born on a pretty morning on June 19, 2014. We were so happy and blessed to finally have our family complete. Alyssa was the little sister to Leilani, who felt proud to be the big loving sister.

Krystie's Story

Krystie Anna Karl-Steiger was born on January 26, 2006 on a warm sunny winter day in California. Our precious little girl had a full head of hair, and gulped down her first bottle in record time.

Ryan's Story

Ryan Anthony Babo was born February 19, 2002. Like all Tay-Sachs children, he was absolutely beautiful. I remember lying in bed next to him when he was just a week old, watching him sleep, wondering what I had ever done in my life to deserve him.

Molly's Story

Molly Grace was born on September 26, 2003. She was born 2 months early and weighed only 4lbs 0oz. Although she was so small she was very healthy.

Elise's "Big Elise" Story

Elise Catherine ten Berge was born on February 5, 2003. She was our first child and as all new parents do, we thought about what Elise's future would be like: her first word, her first step, and her first day of school.

Dakota's Story

Dakota Jean Bihn was born on May 30, 1999. She was a beautiful baby, weighing in at exactly 8 pounds. Everything about her seemed perfect. During Dakota's first year, she developed as a normal baby should. She sat up, rolled over, ate, and walked, all when she should.

Conner's Story

Conner, a precious miracle and an amazing creature sent to Carl, Brenden and myself one cold, snowy January day. From the second he entered our life, I knew in my heart he was so incredibly special. His first smile, his first cry, even his first breath, he was--and remains--beautiful.

Lexi's Story

My name is Alexis Nichole Markowich or just "Lexi". I was born on March 9, 2001 to Craig and Nichole Markowich and I also have a big sister Brianne. When I was four, on August 4, 2005, we got the devastating news that I had Juvenile Onset Tay Sachs Disease (JOTSD).

Isabel's Story

Isabel was born in Buenos Aires on February of 2009. Until the age of two Isabel was a healthy little girl. She had the life that any other child could have: school, little friends at park, holidays and trips to Spain to visit her family. And always a big smile on her face...

Lexi's Story

Our daughter Lexi was born on March 30, 2011. She was born in Junction City, Kansas right outside of Fort Riley. I am in the army so.....

Nathan's Story

Our son Nathan Harney is almost 17 months old. He is a wonderful, happy baby who has beautiful blue eyes, a huge personality, and is the light of our lives. He is a gentle soul that we have been blessed with......

Karin's Story

My sisters and I had what seemed to be a normal up bringing in Southwestern, Ohio to a set of parents who were regular too.....

Isaiah's Story

On March 16, 2007, Isaiah came into the world at 9:41 PM weighing 8 lbs. 6 oz. he was greeted by his daddy, Grandma Lisa, and Great Aunt Chaundra.

Rachaeli's Story

Rachaeli entered this world with her eyes open wide; God delivered her to us shortly before the start of the Sabbath on Friday October 25, 2002. It was a perfect delivery, following a perfect pregnancy. Rachaeli was absolutely captivating.

Kaiden's Story

Kaiden was born December 20, 2006. He was my beautiful blue eye, blond hair angel. He was the best baby any parents could ask for. He smiled constantly and barely cried. I would tell my Mother all the time that he was my "special little man".......

Elise's "Baby Elise" Story

Elise was born December 1, 2004 in Santa Maria, California. She was an absolutely perfect baby with an easy pregnancy. We never imagined we could love someone as much as we love Elise. The next 6 months were the happiest months of our lives......

Cole's Story

Travis Cole Snellgrove was born to Wendi and Travis on April 12th, 2004. He was born with no problems and was home the next day. He was a very good baby and we had no problems with him for the first month, then he started having trouble.....

DJ's Story

Dylan James Manning (commonly referred to as "DJ") was born on Thanksgiving Day, November 22, 2001. Dylans arrival was a long awaited event for his parents, Brian and Sherri of Atglen, Pennsylvania. Although Dylan was anxious to arrive almost four weeks early, he was not quick to reach his milestones. Doctors naturally gave him a little extra time to reach things like crawling and rolling over due to his prematurity.

Amelia's Story

Amelia was born September 29, 2006 and was a sweet, easy-going baby right from the start. Her baby book filled up as it should have first smile at four weeks, rolled over at four months, babbled at five months.

Charles Story

Charles Lee Anderson was born on February 26, 2006 to Bryce and Amy Anderson. His sister Anna was 14 and brother Ben was 11. Charles Lee was so perfect.

Emma's Story

Emma Rose was born on May 17, 2004. She was very eager to enter our world - arriving before my doctor could even get to the hospital! She was a beautiful, healthy, and sweet baby.

Lacie's Story

My name is Lacie Wivell and this is my story. I was born on April 8, 2004, to Rick and Lisa Wivell. I had two older sisters, Amanda and Rikki, and two older brothers, Levi and Colby. I also had another brother, Dakota, that went to be an angel in 2001.

Mallory's Story

Mallory Rayne Salazar is a ray of light that came to us one rainy Saturday afternoon. She was born on July 14, 2007 and was 7lbs. 8oz. of pure perfection. From the first time I laid eyes on her, I knew there was something "special" about her. Little did we know just how much she would teach us.