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

Cure Tay-Sachs Foundation

The Cure Is Within Reach!

Since our creation in June 2007, the CTSF has raised $4,122,479 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 - Bertha & Glenn Wahrmund, Nick Athanasakos,  Nike *** Research PhD: $1,000 to $4,999 Donation - Bosch Charity Committee, Brittany Canum Bosch Inc., Christopher Ammann, Dave & Julie Rabinowitz, Dave & Nicki Luce, Dozier Hood, Frank Buonanotte, Inez Branca Family Foundation, Julie Morgan Hooper, Mary McDonald, Network For Good, Nu-Di Corporation, Rick Karl & Bruce Steiger, Robert Togie, Todd & Holly McDonald, Todd Brubaker, Wells Fargo Community Funding *** Research: $500 to $999 Donation - Brandi Laird, Carl & Jimmye Green, Christopher Modelewski, Cynthia Reifel, Doug & Kathleen Bivona, Erie Indemnity, Greg Turtletaub, Harrison's Roast Beef, Jeff Green, Karl & June Reidel, Keith Babo, Kevin Coombes, Lauren & Jonathon Rabinowitz, Murphy Distribution, Newfield Exploration Corporation, Peter McCarthy, Roberta & Ralph Keefner, Roy Beckelhymer, Sarah McKeever, Scott & Diana Metzger, Steve and Vickie Hofman, Tim & Sandra Windham, Tom Collier, Walter Reifel *** Treatment Provider: $250 to $499 Donation - Andrew Babiak, Berrien Coimmunity Foundation, BofA Employee Giving, Erin Mitchell, Filterqueen, Gina Cousineau, Jeanne Karl, Julie Dow, Katie & Matt Baker, Lawrence & Susan Scheps, Lisa Brinker, Ron Little, Superior Air Health, UBS *** Symptom Manager: $101 to $249 Donation - Andrew Fleming, Blue Sky Vinyard Jim Ewers, Bob & Becky Leach, Brian & Sherri Manning, Canadian checks, Casey & Tom Pounds, Cristina Etchells, Euclid School NJ, Jake & JoAnn Martz, Jeff Keefner, Jeffrey Keefner, Jeffrey Kumpula, Jennifer Slataper, Justin & Erica Jones, Kari Elrod, Larry Brown, Linda & Casey Salony, LLR Inc., Masud & Hanan Shaukat, Robert Ehrlich, RobertEhrlich, Superior Air Health, Thomas Pounds, United Way, United Way for Southeastern Michigan, United Way of Greater Cleveland, Valley Beit Midrash Shmuly Yankowitz *** Jacob Sheep Parent: $100 Donation - Alan Zishkin, Allan & Jo Ann Rabinowitz, Allan & Jo AnnRabinowitz, Allen & Martha Turner Bauguss, Amie Sparks, Angela Morrissey, Betty Hayes, Bob & Jean Bihn, Brian Mills, CarlDi Paolo, Carol Warner, Carole Valentine, Charles Barrington, Clifton Churchill, Dan Hofman, Danny Guido, Dave Wallis, Debbie Bullard, Deborah Kleinberg, Debra Bunge, Edward Arroyo, Ellen Brezic, Ellen Brezic, Farzad Shirzod, Gary Lewis, Gerald Arbogast, Hart Holdings, Jack Hoehlein, Jamie Wymer, Jane Moeller, Jason Bergeron, JD Martz, Jeannette Carrino, Jeannette Vornkahl, Joan OLear, John & Ellen Nagengast, John & Ellen Nagengast, John McFall, John Troiano, Joseph Ellis, Joseph Vumbacco, Joy Milligan, Keith & Beth Reidel, Kimberly Repenning, Kristian Daniels, Kylie Candy, Longshore Family, Lowell Tyner, M K Strieewske, Marilyn Arbogast, Matthew Puskarich, Matthew Stein, MatthewPuskarich, Michael Trimborn, Michele Giles, Miriam Albert, Nagesh Kanumury, Patty & John Campbell, Paul Kapalko, Perfecto Saenz, Peter McGregor , Rita Sciuto, Robert Lowe, Robert Martin, Roger May, Russell Yelton, Ryan Hildenbrand, Scott & Suzanne Killian, Stacey Gottlieb, Stacie Servidio, Stephan Zoder, Steven Biegel, Terri Lough, Tom & Julie McDaniel, Wayne & Wanda Miller, William & Teresa O'Shea *** Care Provider: $1 to $99 Donation - Abby Hans, Abigale Schaubert, Alicia OConnell, Alicia Pascua, Allison Yates, Alyson Nawossa, Amanda Ackerman, Amanda Kitchen, Amazon Smile, Amy LaPointe, Amy Weiss, Angela Hudgins, Angela McNeeley, Angelica Tolentino, Anne Conley, Arielle Law, ArielleLaw, Barbara Hess, Benjamin Purer, Beth Kelley, Brenna Yard, Brian & Karin Garr, Brittany Marcotte, Cami Keefner, Charlene Roetzel, Charles & Barb Fisher, Charles and Barbara Fisher, Charles Barrington, Charlette Conn, Charlotte Howard, Chrissy Candow, Christina Foster, Christine Haag, Christine Moore, Chubb, Clare Barker, Colusa County, Cyndi Hogan, Davene Fecteau, David Plick, Deb Nolan, Denis & Kristine Sweeny, Dennette Dakis, Devon Erlich, Donald Segal, Enrique Martinez, Frederick Wen, Gail Desantis, Gail Rodin, Gary Barth, Gengraphics LLC, Ginger Harris, Glenn & Megan Kreutzer, Grace Endy, Grace Nyeki, Growing Edge Yoga, Harold & Shoshana Stiefel, Heath Robinson, Heather Lenti, Heidi Vaughn, Jacqueline & Elmer Houghton, James & Alexis Blackman, James & Jean Gilmore, Jana Foster, JD Martz, Jean-Sebastian Morin, Jeff & Sharon Keefner, Jeff Keefner, Jenna Schule, Jennifer Basilo, Jenny Lyn Senter, Jenny Ta, Jodie Lahman, John Shimkus, Jorge Velasco Arrieta, JorgeVelasco Arrieta, Jose Romero, Judith Kanal, Judith Lujan, Julie Robinson, Just Add Water, Karen Duffy, Karen Hunter, Karen Krantz, Karla Jones, Kassi & Heath Robinson, Katheryn Alexander, Kevin & Barbara Doyle, Kirsten Shipp, Laura Hook, Laura Richard, Lauren Wineman, Laurie Tenberge, Lawrence & Beverly Tillman Jr., Lei Loni Ashley Kershaw, Leonard & Elaine Ransil, Leslie Sommer, Linda Donnelly, Linda Feingold, Linda Warren, Liz Warren, Lorie Van Scoy, Lorin Shelley, Lucia Jones, Lynda and Daniel Vaillant, Madeline Gray, Mai Castro, Maria Greene, Mary Garcia, Matthew Melick, Maureen Bihn, Meghan Usher, Melanie Lomascolo, Melissa Hamilton, Michael & Lori Miceli, Michael Sands, Michael Schwartz, Michael Tremblay, Michelle Sem, Mike Malik, Natalie Osenfort, Natalie Parker, Nicole deMoulpied, Patricia Hegewald, Patrick Gannon, Pedro & Marilda Monserrate, Phillip LoFaso, Plug Media Group, Quinn Martinez, Quynh Bautista, R Marie Jones Collins, Raquel Richarte, Rebecca Warren, Robbie & Lorelei Sandoval, Robert & Jean Bihn, Robert & JeanBihn, Robert & Jeanne Savage, Robert Abramczyk, Rosa Marina Gem-Gonzales, Rosendo Richarte, Ruth Koltonski, Sabrina Hiltunen, Sandra Graham, Sara Lange, Sarah Mattingly, Sarah Noblin, Scott & Catherine Perkins, Selva Hemachandra, Shana Teehan, Shannon Ploude, Shawn & Amy Mark, Soledad Tan, Stacy Giles, State Employees of Indiana, Sue & Robb Mitchell, Susan Kamenar, Tami Doyle, Tara & Thom Douglas, Tara Keefner, Ted Mullucey, Tim & Sue Mahoney, Tindy Youngflesh, Todd Arena, Tracy Gordon, Trae Vacek, Trudy McSweeney, Truist, Tyler Leveski, United Way, Victor & Diane Vacek, Willian N Plick *** Donations made in honor of: - Clem & Sheila DeCrane's 50th Wedding Anniversary, Grayson Kemp, Hunter Combs, Isaac Sandoval, Mackenzie Plick, Philip D. O'Connell, Jr., Phillip D. O'Connell *** Donations made in memory of: - Alexis Markowich, Alyssa Tyner, Amelia Alford, Annabel Pounds, Bianca Candy, Charles Lee, Chuck Ellens, Cora McDonald, Dakota Bihn, Dylan "DJ" Manning, Elise Rochman, Elise ten Berge, Emma Rabinowitz, Erin Marnien, Hailey Kitchen, Jacob Jones, Jenna, Krystie Karl-Steiger, Lexi Gordon, Lori Novicky, Nathan Harney, Owen, PJ Arbogast, Rachelli Fier, 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

June was an eventful month for the Cure Tay-Sachs Foundation. We raised a lot of money, we had fundraisers, we started something that is circling the world, and we said Farewell to Cora at a Celebration of Life in Houston. I'm not quite sure where to start...

We raised $36,815.92. As important, we raised awareness all over the globe!!!

Donations came in for Cora, Dakota, Elise T., Bianca, Amelia, Grayson, Charles Lee (Krystie's boyfriend from Missouri) Emma, Riley, Hunter, Nathan H, Alexis M., DJ, Owen, and Elise R. We also got a large donation in honor of Dr. Eric Fier. That happened last month too. Clone that man!!! We also saw a number of matching corporate gifts. How cool is it to get money from JP Morgan and UBS? I don't hate the banks anymore!!!

Julie Rabinowitz pulled off yet another year of "Jump for Tay-Sachs" and raised even more than last year. Facebooks "Network for Good" sent us a nice check.... people I don't even know are setting up appeals on their FB account using their Network for Good service. Anyone can do it!!

I had a nice chat with Rabbi Shmuly Yankowitz at Phoenix's Valley Beit Midrash Temple. Meeting this man gave me new hope that humanity and goodness will prevail in this nutty world. A friend set me up to do a video (thanks Brad, the author of the Award Winning novel "The Intersect" and it was a great experience. I even walked out with a check. God works in mysterious ways.

Speaking of God, the Celebration of Life for Cora was so well done. The Church in Houston was packed, and Holly and Todd brought tears to my eyes. It was an honor to celebrate with Cora's friends and family

Have you hiked for Grayson yet? You better get on the bandwagon quick, because if you haven't, you are well behind people all around the globe. Grayson's Mom Felicia is also going to be interviewed next week on Good Day Sacramento. All I can say is #HikeForGrayson!!!! I doubted Felicia when she told me that she was going to make people sweat in the hot summer of 2017, and then have them send us money. Boy, was I wrong.

I want to congratulate my good friends Sherri and Brian Manning on their successful Golf outing in memory of DJ. That kid sure changed the world for the better!! I also want to thank the wonderful Warren family of Salem, Mass. It's a hassle for Jim to make it out to our long-time donor Harrison's Roast Beef, but he did it to the tune of $317. What a family!!

Finally, I know you want Golf and Tee shirts. Just shoot me a note and I'll get them out to you. Tee's spread the word, and our golf shirts make you the best dressed person wherever you go. Oh, did I mention that my friend Nike at Nike picked up tab for 105 Dri-Fits? When you shop, remember how good Nike has been to us over the years.

People ask me.... "don't you get tired of asking for money?". And I say, If I don't ask, you don't give. And If you don't give, we don't cure". That's pretty simple. Think of our kids, and don't ever be afraid to ask. The quality of a person's character is defined by what they do for others.

The year is half done..... thanks for all your support.

Ps: #HikeforGrayson

Family Stories

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.