- (562) 212-1071

- 2409 E. Luke Avenue Phoenix AZ 85016

- (562) 212-1071

- 2409 E. Luke Avenue Phoenix AZ 85016

Cure Tay-Sachs Foundation

The Cure Is Within Reach!

Since our creation in June 2007, the CTSF has raised $4,104,861 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

2017 Donor Recognition

CURE Level: $5,000+ Donation - Nick Athanasakos *** Research PhD: $1,000 to $4,999 Donation - Bosch Charity Committee, Brittany Canum Bosch Inc., Christopher Ammann, Dave & Nicki Luce, Nicki & Dave Luce, Nu-Di Corporation, Rick Karl & Bruce Steiger, Todd & Holly McDonald, Todd Brubaker *** Research: $500 to $999 Donation - Christopher Modelewski, Doug & Kath Bivona, Doug & Kathleen Bivona, Erie Indemnity, JeffGreen, JohnathonRabinowitz, Karl & June Reidel, Keith Babo, Kevin Coombes, Murphy Distribution, Peter McCarthy, Roberta & Ralph Keefner, Roy Beckelhymer, Scott & Diana Metzger, Steve and Vickie Hofman, Tim & Sandra Windham *** Treatment Provider: $250 to $499 Donation - Andrew Babiak, Filterqueen, Gina Cousineau, Jeanne Karl, Julie Dow, Superior Air Health *** Symptom Manager: $101 to $249 Donation - Bob & Becky Leach, Casey & Tom Pounds, Euclid School NJ, Jeff Keefner, Jeffrey Kumpula, Linda & Casey Salony, Masud & Hanan Shaukat, RobertEhrlich, United Way for Southeastern Michigan, United Way of Greater Cleveland *** Jacob Sheep Parent: $100 Donation - Alan Zishkin, Allan & Jo AnnRabinowitz, Angela Morrissey, Bob & Jean Bihn, Brian Mills, CarlDi Paolo, Charles Barrington, Dan Hofman, Danny Guido, Dave Wallis, Ellen Brezic, Farzad Shirzod, Gerald Arbogast, Hart Holdings, Jack Hoehlein, JD Martz, Jeannette Carrino, Joan OLear, John & Ellen Nagengast, John Troiano, Kimberly Repenning, Marilyn Arbogast, Matthew Stein, MatthewPuskarich, Nagesh Kanumury, Patty & John Campbell, Perfecto Saenz, Robert Lowe, Robert Martin, Russell Yelton, Ryan Hildenbrand, Stacie Servidio, Stephan Zoder, Tom & Julie McDaniel *** Care Provider: $1 to $99 Donation - Alyson Nawossa, Amanda Kitchen, Amazon Smile, Amy LaPointe, ArielleLaw, Barbara Hess, Benjamin Purer, Charles & Barb Fisher, Charles Barrington, Chubb, David Plick, Deb Nolan, Donald Segal, Enrique Martinez, Gengraphics LLC, Grace Endy, Heath Robinson, Heidi Vaughn, JD Martz, Jeff & Sharon Keefner, John Shimkus, JorgeVelasco Arrieta, Judith Kanal, Karen Hunter, Karen Krantz, Kassi & Heath Robinson, Lei Loni Ashley Kershaw, Liz Warren, Lorin Shelley, Lucia Jones, Meghan Usher, Melanie Lomascolo, Michael Sands, Michael Tremblay, Nicole deMoulpied, Patrick Gannon, Pedro & Marilda Monserrate, Phillip LoFaso, Plug Media Group, Rebecca Warren, Robbie & Lorelei Sandoval, Robert & JeanBihn, Rosa Marina Gem-Gonzales, Sarah Mattingly, Shannon Ploude, Stacy Giles, State Employees of Indiana, Tara & Thom Douglas, Tracy Gordon, Truist, United Way *** Donations made in honor of: - Clem & Sheila DeCrane's 50th Wedding Anniversary, Isaac Sandoval, Mackenzie Plick *** Donations made in memory of: - Alexis Markowich, Annabel Pounds, Chuck Ellens, Dakota Bihn, Dylan "DJ" Manning, Elise ten Berge, Hailey Kitchen, Krystie Karl-Steiger, Lexi Gordon, Lori Novicky, Riley Luce ***

Click here to view Donor List

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.

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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.

Last Month's Update

We had a good month with $12,014 collected from 97 kind and generous people!!!!

We had a good month here at our Phoenix HQ with 97 folks stepping forward to help our kids with donations for research. We brought in just over $12,000 which takes us over the $4.1 million mark to a grand total of $4,104,844!!!

We had two fundraisers this month. One celebrated the life of beautiful Brook Dianne. The other honored the celebrated Dakota Bihn and a very special birthday for her Mom. Thanks to both Kate and Julie burning up Facebook and doing a great outreach to their friends and their friends. FB is such an easy way to raise funds for our cause, and there are lots of ways of going about it!!!

Our new website it up and running! It still has a few bugs I need to fix, but the reviews have been positive and now it's time to add content. So, if you have something you want to share, just let me know and I'll get it on there. Please share the link, www.curetay-sachs.org, with your FB friends, buddies, acquaintances, and even people you would like to know. We are also now on Twitter and Instagram. The BOD welcomed its newest member, Royce Stringer, to the board. Royce and lovely wife Holly, along with son Karson live in Prescott, AZ. They lost their boy Brennan to Tay-Sachs. We received donations last month in memory or in honor of: Dakota, Krystie, Erin, PJ, Conner, Ryan, and Brook. We also had some fundraisers where we have not recognized the revenue yet, so we can talk about them next month. Finally, we have fundraisers now scheduled with golf outings, a prom (that's a first), kickball, jumping, and a couple of kitchen Chef type sell off's. I've been gathering items and gift cards for fundraisers, so I can help you do one as well. Small fundraisers are fun to do, so don't think for a minute that you can't pull it off!!

Family Stories

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.