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 $4,139,636 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 Little, Mary McDonald, Network For Good, Nu-Di Corporation, Patricia Beaudry, Rick Karl & Bruce Steiger, Rick Murdock - ElDorado Casino's, 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, Doug Bivona, Erie Indemnity, Greg Turtletaub, Harrison's Roast Beef, Jeff Green, Jeff Miller, John Murphy, Karl & June Reidel, Keith Babo, Kevin Coombes, Lauren & Jonathon Rabinowitz, Murphy Distribution, Newfield Exploration Corporation, Northern Smiles - Troy Stansberry, Perry Waughtal, 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, National Football League (NFL), Ron Little, Superior Air Health, UBS, Walmart - Coldwater DC *** Symptom Manager: $101 to $249 Donation - Alyson Rose-Wood, 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, James & Nancy Fatheree Jr., Jeff Keefner, Jeffrey Keefner, Jeffrey Kumpula, Jennifer Slataper, Justin & Erica Jones, Kari Elrod, Kylie Candy (Austraila), 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, B. Stone, Barbara Brown, 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, Don Olender, Donald & Diane Grieb , Dream Dinners La Mesa, Edward Arroyo, Ellen Brezic, Ellen Brezic, Farzad Shirzod, Gary Lewis, Gerald Arbogast, Gloria Nelson, Hal Waughtal, Hart Holdings, Jack Hoehlein, Jamie Wymer, Jane Moeller, Jason Bergeron, JD Martz, Jeannette Carrino, Jeannette Vornkahl, Jeffrey Kumpula, Jesus A Reyes Garcia (Mexico), Joan OLear, John Malenfant, John & Ellen Nagengast, John & Ellen Nagengast, John McFall, John Troiano, Joseph Ellis, Joseph Vumbacco, Joy Milligan, Keith & Beth Reidel, Kimberly Repenning, Kristian Daniels, Kristin Robinson, Longshore Family, Lowell Tyner, M K Strieewske, Marilyn Arbogast, Matthew Puskarich, Matthew Stein, MatthewPuskarich, Melisa Martz, 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, Warren & Melanie Ristow, 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, Amanda Miles, Amazon Smile, Amy LaPointe, Amy Weiss, Angela Hudgins, Angela McNeeley, Angelica Tolentino, Anke and Roland Merton, Anne Conley, Arielle Law, ArielleLaw, Barbara Hess, Benjamin Purer, Beth Kelley, Brenna Yard, Brian & Karin Garr, Brittany Marcotte, Brooke Dougherty, 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, Christopher Clayton, Chubb, Clare Barker, Colusa County, Cyndi Hogan, Davene Fecteau, David Plick, Dayle Rodenborn, Deb Nolan, Debbie Hudgins, Denis & Kristine Sweeny, Dennette Dakis, Dennis Gallagher, Derek Weems, Devon Erlich, Donald Segal, Dorothy Ferrer, Douglas & Jana Lynn Kaba, Dr. Borg, DDS., Edward Theordore, Ellen Safier, 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, Hollie Andrus, Irene Brooks, Jacqueline & Elmer Houghton, James & Alexis Blackman, James & Jean Gilmore, James Leo, Jana Foster, Janet Herrera, JD Martz, Jean-Sebastian Morin, Jeannie Kim, Jeff & Sharon Keefner, Jeff Keefner, Jenna Schule, Jennifer Basilo, Jenny Lyn Senter, Jenny Ta, Jodi Gilray, 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, Kelly McAllister, Kevin & Barbara Doyle, Kirsten Shipp, Kylie Candy, Laura Folkes, Laura Hook, Laura Richard, Lauren Wineman, Laurie Tenberge, Lawrence & Beverly Tillman Jr., Lee Wentzel, 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, Lynn Gonzalez, Madeline Gray, Mai Castro, Marcia James, Margaret Walters, Maria Greene, Marian Mankin, Mary Ann Schettino, Mary Branton, Mary Ciafardini, Mary Garcia, Matthew Melick, Maureen Bihn, Megan Strahon, Meghan Usher, Melanie Lomascolo, Melisa Kemp, Melissa Hamilton, Michael & Lori Miceli, Michael Jordan, Michael Sands, Michael Schwartz, Michael Tremblay, Michelle Sem, Mike Malik, Natalie Osenfort, Natalie Parker, Needles and Nails, Nicole deMoulpied, Noelle MacGregor, Noreen Smith, One OC, Patricia Hegewald, Patrick Gannon, Pedro & Marilda Monserrate, Phillip LoFaso, Plug Media Group, Quinn Martinez, Quynh Bautista, R Marie Jones Collins, Raquel Richarte, Rebecca Avitia, Rebecca Warren, Robbie & Lorelei Sandoval, Robert & Jean Bihn, Robert & JeanBihn, Robert & Jeanne Savage, Robert Abramczyk, Roger Meredith, Rosa Marina Gem-Gonzales, Rosendo Richarte, Ruth Koltonski, Ryan Greenbaum, Sabrina Hiltunen, Sandra Graham, Sara Lange, Sarah Hilton, Sarah Mattingly, Sarah McMurray, Sarah Noblin, Scott & Catherine Perkins, Selva Hemachandra, Shana Teehan, Shannon Ploude, Shawn & Amy Mark, Soledad Tan, Stacy Giles, Stacy Olds, State Employees of Indiana, Stephanie Berry, Sue & Robb Mitchell, Susan Kamenar, Susan Wallace, 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, Vanessa Meredith, 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

New Drug Offers New Hope

IMPORTANT READ: Finally, perhaps, some HOPE from a "new" treatment:

I've been authorized by Mallory Taylor, CEO of IntraBio in the UK, to pass on to you some information on a drug that may have some potential, in some cases within our community, to slow the build-up of GM2. Commonly known as Tanganil, this over the counter (in France) and inexpensive drug has shown great promise and is worthy of further study. These studies are planned as noted below. Neither I nor the CTSF re...commend or advocate for this drug at this point, as it is not FDA approved for use in the US.

I pass on this information because doing so is consistent with our mission statement of communicating on-going research and discovery related to the treatment of Tay-Sachs. While this drug is NOT a cure, I believe any news of such significant importance should be shared with our community and our donors.


IntraBio Clinical Programs

Tay-Sachs Disease with IB1000

IntraBio Inc is pleased to announce significant progress in the treatment of rare neurodegenerative diseases with IB1000, a well-tolerated, modified amino acid that is administered orally. Most notably, IB1000 is showing promising effects in pre-clinical and Phase 1 observational clinical studies in patients with late-onset Tay-Sachs (TS) disease. These findings are also supported by results from in vitro cellular studies and studies in a Sandhoff animal model. In addition, patients with Niemann-Pick Type C (NPC) disease, and various subtypes of Cerebellar Ataxias (CA) have been treated with IB1000 and observed symptomatic benefit. A multi-national, randomized, controlled Phase 2/3 clinical trial of IB1000 in 108 CA patients was recently completed, with the final results expected in 2018.

IntraBio is now planning multi-national randomized, controlled pivotal clinical trials to evaluate the safety and efficacy of IB1000 as a therapeutic intervention in patients with TS, NPC and specific CA diseases. IntraBio hopes to commence enrollment in one or more of these pivotal trials in the EU in early 2018 to be followed by recruitment in North America. In these trials, the safety and efficacy of IB1000 will be determined for each indication using validated clinical and quality of life assessment scales. IntraBio will provide full details of clinical site locations and the clinical trial design including inclusion criteria as soon as they are available.

About IntraBio

IntraBio is a global leader developing novel therapies and treatments for "orphan" and neurodegenerative diseases, including lysosomal storage disorders, which have high unmet medical needs. IntraBio has been granted Orphan Medicinal Product Designation by the European Medicines Agency (EMA) for two drug compounds, including IB1000 for the treatment of Niemann-Pick Types A, B & C diseases.

Mallory Factor

Chairman of IntraBio Inc

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.

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

In Honor or Memory Of

Matching Gift and Volunteer Grant information provided by
Powered by Double the Donation

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

July was an eventful month. We had 100 kind and generous donors. Our walking human billboards have begun roaming the country with their new and mostly free CTSF shirts (I've befriended the good folks at the local post office and they too have shirts now!) Brave Brennan Stringer celebrated his 5th Birthday in Heaven. Cora McDonald's family and friends continued to remember her, and Hikes for Grayson happened in lots of countries. Altogether, folks chipped in a very respectful $17,156.87. That doesn't count most of Facebook's Network for Good dollars collected in June and July, mostly for #HikeforGrayson, that is posted on so many folks pages! They take a while to cut a check... I'll have to talk with Mark Zuckerberg on this.

Thanks to the Warren Family, we heard from Harrison's Roast Beef for the first time in a while. $350 or so from a restaurant's customers that have been supporting us for years. They got a nice plaque and a bunch of shirts to celebrate and motivate. I'd also like to thank my friends at the ElDorado Casino and Resorts in Reno who kicked in $2500 (I tend to lose). And how could I not mention my Dentist, Troy Stansberry. I had a tooth filled while wearing my CTSF shirt. He asked me about it, and told him my Krystie story. He seemed moved and I told him I'd send him a shirt of his own. He returned the favor with a check for $500.

My favorite check this month was from the NFL. It was our take for Ken Bihn's purchase of Alex Mack's game cleats with the CTSF logo on them. I almost didn't cash the check, but alas, I did. I did take a picture of it though.

Our collective story is a sad, but powerful one. Use it, educate, repeat. "If you don't ask, they don't give, and it they don't give, we don't cure." Simple. Life for our kids is too short to be shy about what we do.

This weekend is the annual "Princess Riley Swing for a Cure" Golf fundraiser in Coldwater, Michigan. I love that town and the Luce family. If you want to go and golf... well, you can't. Sorry.... it's been sold out for a while. But you can always give a shout out of appreciation to Dave and Nicki. God made a special couple, and put them in a special town.

I'm using a new e-mail service that lets me make sure that all my communication to our community are able to be read on PC's and mobile devices. I'll be putting this update in them going forward, as well as in FB and on our webpage. I'll be sending out my quarterly research update on all 3 venues in the next couple of weeks. Doctors Esteves, Anderson, Martin and Walia will all be contributing.

PS: I have lots of youth shirts that need a kid's back.... Don't be shy

PPS: #HikeforGrayson!!!!

PPS: Oh yeah, donations this month came in for: Elsie R, Abby, Isacc, Krystie, Cora, Grayson, Brennan, Dakota, Bianca, and Riley...... we also had a larger number of donations than usual for "all the kids" from Charitable Trusts, Private Foundations, and Corporations. Sometimes it helps to simply write to them.... And ask!

Not into writing letters or not comfortable in doing so?? Shoot me the information. I'll write to anyone, and I'll might even send them a shirt. Michael Phelps lives down the road a few miles. Do you think he is an XL or XXL?

Have a great August! #DoSomethingForGrayson

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.