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 $4,283,929 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!

OUR HOLIDAY APPEAL IS NOW IN PROGRESS!!!

Donate Now

2017 Donor Recognition

CURE Level: $5,000+ Donation - Bertha & Glenn Wahrmund, FACEBOOK DONORS, Martha D.Clark, Network For Good, Nick Athanasakos, United Way- All US,  Nike *** Research PhD: $1,000 to $4,999 Donation - Adam & Brianne Anderson, Adam Anderson, Ashley Bivona, Benevity , Bosch Charity Committee, Brad & Teresa Mynhier, Brian and Coleen Plick , Brittany Canum Bosch Inc., Charles & Lori Combs, Charles Barrington , Cheryl Babo, Christopher Ammann, Corrigan & Krause CPA's, Dave & Julie Rabinowitz, Dave and Nicki Luce, Debbie Smith, Doug and Kathleen Bivona , Dozier Hood, Frank Buonanotte, Go Fund Me, Inez Branca Family Foundation, John Stringer, Jon & Laurean Rabinowitz, Jon and Lauren Rabinowitz , Julie Morgan Hooper, Kelsey Charity Run , Kelsey Charity Run Inc , Ken & Julie Bihn, Kim Reising , Korigan & Krause CPA's , Mary Little, Mary McDonald, Matt Lunchick , Megan Herman, Mike Fitzgerald , Mona Vogel, Nu-Di Corporation, Patricia Beaudry, Paul & Julie Beckhusen, Rick Karl & Bruce Steiger, Rick Murdock - ElDorado Casino's, Robbie & Lorelei Sandoval and Family , Robert Togie, Royce & Holly Stringer, Steve and Vickie Hoffman, Tim & Sandra Windham, Tim and Sandy Windham , Todd & Holly McDonald, Todd Brubaker, United Way Cleveland, Wells Fargo Community Funding *** Research: $500 to $999 Donation - Adobe Corporation, Arlton Cangelosi, Arthur Coleman, Automotive Equipment Technologies, Beverly Long, Brandi Laird, Carl & Jimmye Green, Christopher Modelewski, Cynthia Reifel, Doug & Kathleen Bivona, Doug Bivona, Erie Indemnity, Gayla Jones, Glenn & Janet Traylor, Greg Turtletaub, Harrison's Roast Beef, Jeff Green, Jeff Miller, Jenni Schoppers, John Murphy, Justin Lehman, Karl & June Reidel, Kassi Robinson, Keith Babo, Kevin Coombes, Lauren & Jonathon Rabinowitz, Lowell Tyner, Michael Weisbarth, Murphy Distribution, Newfield Exploration Corporation, Northern Smiles - Troy Stansberry, Patrick & Joan Duggan, Perry Waughtal, Peter McCarthy, Preformed Line Products Company, Robert & Jill Lowe, Roberta & Ralph Keefner, Roy Beckelhymer, Sarah McKeever, Scott & Diana Metzger, State Employees Indiana, Steven Schachtman, Stringer Design, Suzanne Wernette, Tom Collier, United Way of SE Michigan, Walter Reifel *** Treatment Provider: $250 to $499 Donation - Adam Losinski, Alicia Richarte, American Millenium, Andrew Babiak, Anthony Ronghi, ATEB LABIB Agency, Bedard, Kurowicki Co., Benevity , Berrien Coimmunity Foundation, BofA Employee Giving, Brandon & Angela Neusbaum, Brien & Danielle Kelly, Chad Rakocy, Colette Healy, D&L Steakhouse Inc, David Allen, Erin Mitchell, Excell Paving Plus, Filterqueen, Geoffrey Wool, Gina Cousineau, Hampton Homes, Henry & Corina Burke, J.B. Doyle Electrical, James & Linda Doyle, Jeanne Karl, Jessica Gonzalez, John & Carol Lacamera, John & Jeanne Goleskie, Julie & Tom McDaniel, Julie Dow, Karl Polen / Jemeille Ackourey , Katie & Matt Baker, Lawrence & Susan Scheps, Lee Levitt, Lisa Brinker, Lou Roca, Michael & Kimberly Lex , Mike & June Martz, Nancy & Daniel Terlecki, National Football League (NFL), Nicholas Boster CPA's, Pamela Williams, Peter C. Smith, Prompt Care Express, Rahway Steel Co, Revitalize, LLC, Ron Little, Superior Air Health, Tamara M.Billy, The Landscsculptors, UBS, Walmart - Coldwater DC *** Symptom Manager: $101 to $249 Donation - Alica Cole, Alyson Rose-Wood, AMG Investments - The Hangout, Andrew Fleming, Ashley Luce, Blue Sky Vinyard Jim Ewers, Bob & Becky Leach, Borys & Leslie Pakush, Bree Oni Salon and Spa, Brian & Sherri Manning, C & O Insurance, Canadian checks, Carl Green, Casey & Tom Pounds, Christopher Capasso, Cristina Etchells, Dale & Lynn Alpaugh, David & Abigail Wohlers, David & Lynn Bach, David Gluckman, Dylan & JodiFoster, Elizabeth Masiero, Eric & Annamarie Prono, Euclid School NJ, Faith Stidham, Geiger E.D.M. Inc., George M.Scheurich, Gil & Linda Bihn, Goodshop, Greg Doney, Harrison's Roast Beef, Jack Ignatowitz, Jake & JoAnn Martz, James & Nancy Fatheree Jr., James or Van Temme, Jeff Keefner, Jeffrey Keefner, Jeffrey Kumpula, Jennifer McGuire, Jennifer Slataper, Joann Wallis, Justin & Erica Jones, JWR-SCR-SCR Inc., Kari Elrod, Kate Richardson Photograhpy, Korina & Henry Burke, Kylie Candy (Austraila), Ladd Wiidanen, Larry Brown, Leigh Schiff, Libby Woolford, Linda & Casey Salony, Linda Artman, LLR Inc., Loran & Suzan Fickle, Lynn Meryhew, Marguerite McDonald, Marilyn Miller, Mary Girello, Masud & Hanan Shaukat, Matthew & Laurel Schneider, Michael Plick, Michele Bender, National Christian Foundation, Nichole Fier, Norman Blumenthal, Patrick Kranz, Paypal Charitable Giving, Peter MacGregor, Randolph & Karen Spangler, Renaissance Hair, Rick & Veronica Herman, Robert Ehrlich, RobertEhrlich, Ron & Melody Hostetler, Scott & Robin MacDonald , Sean Murphy, Sheila Guyer, Spectacular Specifications, Superior Air Health, Takenoff Families Foundation, Terry & Deborah Penick, Thomas Pounds, United Way of Indiana, Valley Beit Midrash Shmuly Yankowitz, Walter & Gerri Watkins, William Shine *** Jacob Sheep Parent: $100 Donation - Alan Zishkin, Allan & Jo Ann Rabinowitz, Allan & Jo AnnRabinowitz, Allen & Martha Turner Bauguss, Allisnce Foods, Inc, Alvin Block, Amazon Smile, Amie Sparks, Andrea Barnes Trust, Angela Morrissey, Angles, Inc., Anna Luetticke, Anthony & Amy Reteria, Arthur Muller, B. Stone, Barbara Brown, Betty Hayes, Bob & Jean Bihn, Branch Insurance Agency, Brian Mills, CarlDi Paolo, Carol Warner, Carole Valentine, Carolina Millon, Charles Barrington, Charles & Edith Bauschard, Clifton Churchill, Coldwater Board of Public Utilities, Coldwater Family Dentistry, Coldwater Lake Marina, Dan Hofman, Daniel and Tina Himebaugh, Danny Guido, Dave Wallis, David Plick, Dean and Sandy Windgassen, Debbie Bullard, Deborah Kleinberg, Debra Bunge, Dennis Doyle, Don Olender, Donald & Diane Grieb , Dream Dinners La Mesa, Edward Arroyo, Elizabeth Puckett, Ellen Brezic, Ellen Brezic, Eugene Swift , Farzad Shirzod, Floyd & Ruth Gittings, Frank Heter, Franklin Mint Credit Union, Garrett Vogt, Gary & Terri Ginter, Gary Lewis, Georgia Temman, Gerald Arbogast, Gloria Nelson, Hal Waughtal, Hamaad Chippa, Hart Holdings, Howard Bryson, Jack Hoehlein, Jamie Wymer, Jane Moeller, Jason Bergeron, JD Martz, Jeannette Carrino, Jeannette Vornkahl, Jeffrey & Lynne Hazelelette, Jeffrey & Lynne Martz, Jeffrey Kumpula, Jesus A Reyes Garcia (Mexico), Jill Mader, Joan O'Lear, Joan OLear, John Malenfant, John & Ellen Nagengast, John & Ellen Nagengast, John McFall, John Troiano, John Wellet, Joseph Ellis, Joseph Vumbacco, Joy Milligan, JT's Billiard Bar and Grill, LLC, K & W Mfg. Co., K&B Mechanical , Kathleen Suvak, Keith & Beth Reidel, Kenneth & Cynthia Fickle, Kevin & Barbara Doyle, Kevin & Mary Doherty, Kevin & Michelle Sheppard, Kimberly Repenning, Krista Gaffney, Kristian Daniels, Kristin Robinson, Lisa Resnik, Longshore Family, Lowell Tyner, Ludwick Electric LLC, M K Strieewske, Marilyn Arbogast, Mark Pappakostas, Marvin & Kelli Nantz, Mary Turner, MaryAnn Topping, Masad & Hanan Shaukat, Matthew Puskarich, Matthew Stein, MatthewPuskarich, Melisa Martz, Melisa Spillane, Michael & Mary Trimborn, Michael Trimborn, Michele Esposito, Michele Giles, Michelle DeRocco, Miriam Albert, Modert Excavating, Nagesh Kanumury, Patricia Dwight, Patty & John Campbell, Paul Kapalko, Perfecto Saenz, Peter McGregor , PG&E , Ralph and Pat Martz, Ramakrishna Vellala, Rita Karachun, Rita Sciuto, Robert & Cecilia Bogart, Robert & Jean Bihn, Robert Lowe, Robert Martin, Robin Segal-Gonzales, Roger Talbot, Roscoe & Joann Combs, Russell Yelton, Ryan & Bree Doyle, Ryan Hildenbrand, S and R Products Inc., Samara Abrams, Sandra Gutierrez, Santhosh Manayilakath, Scott & Jennifer Miller, Scott & Suzanne Killian, Somerset Children's, Southern Michigan Bank and Trust, Stacey Gottlieb, Stacie Servidio, Stephan Zoder, Steve and Sharon Elliott, Steven Biegel, Sunset Cove Resort, Susan Besser Williams, Susan Johanssen, Susan Johansson, Susan LubCz, Susan Scheps, Susan Vear, Temple Avodat Shalom, Terri Lough, The Battery Stop, LLC, The Lamp Lighter, Thomas & Heather Eldridge, Thomas Freese, Thomas Marshall, Tim & Valerie Myer, TJ Rampit USA Inc., True Trim Lawn Care, UCT Coldwater Council # 452, Victoria Germano, Warren & Melanie Ristow, Wayne & Wanda Miller, We Pay SV9T, Wilbur Thomas, William & Donna Fitch, William & Marilyn Dosesh, William & Teresa O'Shea, William Plick, Yvonne & Greg Alburtus *** Care Provider: $1 to $99 Donation - Abby Hans, Abigale Schaubert, Alicia Barron, Alicia OConnell, Alicia Pascua, Allison Yates, Alyson Nawossa, Amanda Ackerman, Amanda Kitchen, Amanda Miles, Amanda Snyder, Amy Coppus, Amy LaPointe, Amy Weiss, Angela Fleming, Angela Hudgins, Angela McNeeley, Angelica Tolentino, Anke and Roland Merton, Anne Conley, Anthony & Lei Loni Kershaw, Anthony Tyner, Anthony Wotta, Arielle Law, ArielleLaw, Ashley Kupp, Barbara Hess, Becky Warren, Benjamin Purer, Bernard Schettino, Beth Ann's Embroidery, Beth Kelley, Betty Tawney, Betty Black, Bob Kelly, Bonnie Lapata, Borough of Boundbrook, Brad Devine, Brandy Goundas, Brendon Woodland, Brenna Yard, Brent Beck , Brent Taylor, Brian & Karin Garr, Brian Nelson-Palmer, Brittany Marcotte, Brooke Dougherty, Bruce & Patricia Thomason, Bruce & Shanda Johnson, Bruce & Sharon Gnandt, Cami Keefner, Carol Meszaros, Carole Baldassano, Carolyn Young, CathyYandlle, Cecilia Ramirez, Chanelle Bercaw, Charlene Roetzel, Charles & Barb Fisher, Charles and Barbara Fisher, Charlette Conn, Charlotte Howard, Cheryl Wolcott, Chrissy Candow, Christana Foster, Christina Etchells, Christina Foster, Christina Haviland, Christine Haag, Christine Moore, Christine Rose, Christna Foster, Christopher & Carol Allen, Christopher Clayton, Chubb, CJ's Cookie Co., Clare Barker, Clare Blackstone, Colusa County, Corissa Browne, Courtney Mall, Cyndi Hogan, Cynthia Urrutia, D. Scott or Paul Frisch, Dale & Lynn Alpaugh, Dan & Lisa Sharp, Dana Momahan, Davene Fecteau, Davi Kutner, David & Mary Scullin, David Plick, Dayle Rodenborn, Deb Nolan, Debbie Hudgins, Denis & Kristine Sweeny, Dennette Dakis, Dennis Gallagher, Derek Weems, Devon Erlich, Diane Coury, Doanld & Carolyn Hoffman, Dominick Paradiso, Donald Segal, Donna Moyahan, Donna Sheehan, Dorothy Ferrer, Douglas & Jana Lynn Kaba, Dr. Borg, DDS., Ed & May Cadmus, Edward Theordore, Eileen Bretherick, Eileen Fisher, Elaine Drummand, Elaine Slattery, Elise Wannyn, Elizabeth Masiero, Elizabeth Snyder, Ellen Safier, Emily Beacham, Enrique Martinez, Erika Fiore, Erin Flood, Erin VerDorn, Ethan & Rachel Fisher, Felicitas Richarte, Fran Engel, Frank & Hannah Teague, Fred & Mary Liebmann, Frederick Wen, Fweem, Gail Desantis, Gail Rodin, Gail Schuetz, Gary & Micha Gregory, Gary Barth, Gary Younce Insurance Agency, Gengraphics LLC, George Anthony , Gian Tripicchio, Ginger Harris, Giving Assistant , Glenn & Megan Kreutzer, Gloria Dowiak, GloriaJean Delillo, Go Fund Me, Grace Endy, Grace Nyeki, Growing Edge Yoga, Harold & Shoshana Stiefel, Harold and Bettie Helm, Harry Shipfogel, Heath Robinson, Heather Lenti, Heidi Shen, Heidi Vaughn, Hilda Bodenstein, Hollie Andrus, Irene Brooks, Jacqueline & Elmer Houghton, James & Alexis Blackman, James & Jean Gilmore, James & Sherri Burge, James Leo, James or Van Tomko, Jana Foster, Jane Moeller, Janet & Charles Schmidt, Janet Herrera, Janice Grassia, Jason Bergman, Jason Fitzgeerald, JD Martz, Jean-Sebastian Morin, Jeanne Lambert, Jeannie Kim, Jeff & Sharon Keefner, Jeff Keefner, Jeffrey & Lynne Keefner, Jeffrey Keefner, Jenell Robinson, Jenna Schule, Jennifer Basilo, Jennifer Camfield, Jennifer Cole, Jennifer Leto, Jennifer Vivoli, Jenny Lyn Senter, Jenny Ta, Jeryl Kapica, Jessica Disensa, Jessica Dispensa, Joan Murphy, Joanna Sepe, Joanne Koltonski, Jodi Gilray, Jodie Lahman, John & Kaitleen Chambers, John Daise, John Lacamera, John Shimkus, Jorge Velasco Arrieta, JorgeVelasco Arrieta, Jose Romero, Jospeh Cowan, Joy Milligan, Juanita Barry, Judith Kanal, Judith Lujan, Julie Robinson, Just Add Water, Justin & Erica Jones, Justin & Jessica Tennant, K. Bernhardt, Kaitlyn & Kathleen Chambers, Kamra Brandi, Karen Duffy, Karen Hunter, Karen Krantz, Karla Jones, Kassi & Heath Robinson, Katheryn Alexander, Kathleen Doughty, Kathleen Hughes, Katie Woolsey, Kay Dirschell, Kelly Kakaria, Kelly McAllister, Ken Dietz, Kevin & Barbara Doyle, Kevin & Madeline Rumker, Kimberly & Shaun Wolcott, Kirsten Shipp, Konstantin Burshteyn, Kylie Candy, Laura Folkes, Laura Hook, Laura Richard, Lauren Rabinowitz, Lauren Wineman, Laurie Combs, Laurie Tenberge, Lawrence & Beverly Tillman Jr., Lawrence Howitt, Lee Wentzel, Lei Loni Ashley Kershaw, Leonard & Elaine Ransil, Leslie Sommer, Liam & Allison Ahern, Linda Curcio, Linda Donnelly, Linda Feingold, Linda Warren, Lindsey McBain, Linzy Donato, Liz Warren, Liz Quintero, Liz Warren, Lois Linder, Lois Walsh, Loretta O'Neill, Lorie Van Scoy, Lorin Shelley, Lucia Jones, Lyn O'Kane, Lynda and Daniel Vaillant, Lynn Gonzalez, Lynne Wildrich, Madeline Gray, Mai Castro, Mallory Mertz, Marci Pinkowitz, Marcia James, Margaret Walters, Margeret Case Gerald Geiss, Maria Fleming, Maria Greene, Maria Nelson, Maria Ricio, Marian Mankin, Marianna Imparato, Marion or Nancy Harper, Marjorie Durand, Mark Schultz, Martin & Julie Lepird, Mary & William Costello, Mary Ann Enchura, Mary Ann Schettino, Mary Branton, Mary Ciafardini, Mary Garcia, Mary Love, Matt Templin, Matthew Melick, Matthew Stephenitch, Maureen Bihn, Megan Fisk-ellis, Megan Goodin, Megan Strahon, Meghan Usher, Melanie Lomascolo, Melisa Kemp, Melissa Fleetwood, Melissa Hamilton, Melissa Spillane, Merna Rawla, Michael & Lisa Renshaw, Michael & Lori Miceli, Michael Jordan, Michael Sands, Michael Schwartz, Michael Tremblay, Micharel and Dawn McDaniel, Micharel Plick, Michelle Sem, Michelle Stein, Mike Malik, Nancy Evans, Nancy Higgs, Nancy Landry, Nancy Miller, NancyWhittemore, Natalie Osenfort, Natalie Parker, Natasha Turchan, Needles and Nails, Neil Buckland, New Look Construction, Nicole deMoulpied, Noelle MacGregor, Noelle McGregor , Noreen Smith, Noreen Vongrej, One OC, Orthopedic Care Center, Paola Leone, Patricia Hegewald, Patrick Gannon, Patty Metcalf, Pedro & Marilda Monserrate, Peggie Geist, Phillip LoFaso, Phyllis Von Engel, PJM Consulting, Plug Media Group, Quinn Martinez, Quynh Bautista, R Marie Jones Collins, Rachael Schmidt, Raquel Richarte, Rebecca Avitia, Rebecca Warren, Richard & Kelly Outwater, Richard Gardner, Rita Sciuto, Robert & Jean Bihn, Robert & JeanBihn, Robert & Jeanne Savage, Robert Abramczyk, Robert Savage, Robin Zimmerman, Rosa Marina Gem-Gonzales, Rose Witt, Rosendo Richarte, Ruth Koltonski, Ryan & Kimberly Rose, Ryan Greenbaum, Sabrina Hiltunen, Sagar Mehta, Sager Mehta, Sam Janssen, Sandra Graham, Sara Lange, Sarah Carmack, Sarah Hilton, Sarah Mattingly, Sarah McMurray, Sarah Noblin, Scott & Catherine Perkins, Scott & Jennifer Combs, Scott Cameron, Selva Hemachandra, Shana Teehan, Shannon Ploude, Shawn & Amy Mark, Sherry Donovan, Shiela Rabinowitz, Shirley & Gerald Capasso, Soledad Tan, Stacy Giles, Stacy Olds, Stephanie Berry, Stephanie Kley, Steve & Penny Sankovich, Sue & Robb Mitchell, Susan Boyajian, Susan Carnahan, Susan Kamenar, Susan Kurek, Susan Silver, Susan Wallace, Suzanne Hummel, Sweet Melissa, Tami Doyle, Tammy Johanssen, Tara & Thom Douglas, Tara Keefner, Ted Gaubert, Ted Mullucey, Teresa Rota, Terry & Deborah Penick, The K Foundation, The Wynn Family, Tice Walker, Tim & Sue Mahoney, Tim Gannon, Timothy Spihlam, Tindy Youngflesh, Todd Arena, Tom & Toni Allen, Tom Tengelsen, Toni Williams, Tracy Gordon, Trae Vacek, Tripp Halstead Donation Fund, Trish Storm, Trudy McSweeney, Truist, Tyler DuBois, Tyler Leveski, V R Pruitt, Valarie Sachez, Vanessa Meredith, Veronica Blancett, Victor & Diane Vacek, William & Judith Kirk, Willian N Plick *** Donations made in honor of: - Alyssa Tyner, Charles Lee, Clem & Sheila DeCrane's 50th Wedding Anniversary, Drew Anderson, Dylan Manning, Eli , Grayson Kemp, Grayson Lunchick, Hailey Kitchen, Hunter Combs, Isaac Sandoval, Michael James Beacham, Natalie Barnes, Owen V, Philip D. O'Connell, Jr., Phillip D. O'Connell, Sabrina Tuleja, Talon *** Donations made in memory of: - Alexis Markowich, Alyssa Tyner, Amelia Alford, Annabel Pounds, Bianca Candy, Brooke , Charles Lee, Chuck Ellens, Cora McDonald, Dakota Bihn, Dan Warlick, Dylan "DJ" Manning, Elise Rochman, Elise ten Berge, Emma Rabinowitz, Erin Marnien, Hailey Kitchen, Jacob Jones, Jenna, Krystie Karl-Steiger, Lexi Gordon, Lori Novicky, Mackenzie Plick, Nathan Harney, Nikko Zollar  , Owen, PJ Arbogast, Rachelli Fier, Riley Luce, Shannon O'Lear ***

Click here to view Donor List

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

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.

WHAT'S HAPPENING NOW?

Thrivent Financial

Thanks to Bob and Jackie Lehman, we are now registered with Thrivent Financial Products. As a fraternal benefit nonprofit, monies from their products can be designated to charities. My mom submitted the Cure Tay-Sachs Foundation and it has been approved. So anyone with a Thrivent product can designate CTSF as a beneficiary. Thrivent originally was a Lutheran Fraternal Insurance non-profit but now is open to all people.

Thrivent Financial is a financial services organization that helps Christians be wise with money and live generously. Visit Thrivent.com/aboutus for more.


Dear Mr Karl:

Thank you once again for expressing your continued interest in the investigational compound, Nacetyl-D, L-leucine, and its potential therapeutic applications for the treatment of Niemann-PickDisease type C, Tay-Sachs, ataxias and other types of lysosomal storage and neurodegenerative diseases.

In your recent inquiry, you asked for the status of the preparatory activities for the planned clinical trials. We are very pleased to inform you that IntraBio Inc and Pierre Fabre Laboratories have now concluded an agreement to enable IntraBio to gain full access to all documents related to N-acetyl- D,L-leucine and its enantiomer, owned by Pierre Fabre, to support the preparation of the required documents to seek regulatory approval in order for these clinical trials to be initiated in a timely manner.

Both companies are also engaged in ongoing discussions to explore the opportunity for Pierre Fabre Laboratories to provide further technical support for these clinical trials to be carried out by IntraBio as the study sponsor.

With your continued support, we very much look forward to ensuring that the clinical development will lead to new methods of treatment to benefit patients in these rare and life-threatening conditions where there is unquestionably a clear unmet medical need.

Yours sincerely;

For IntraBio Inc

Mallory Factor, Chairman

For Pierre Fabre Laboratories

Silvia Gatti-MacArthur, Head of Central Nervous System Innovation Unit


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

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

Santa and 134 kind and generous folks brought us $46,904 in December. Those are very nice season's greetings indeed. All of that will go to the $730,000 I expect to write in research checks this year. If you wonder why I keep asking everyone to do a Fundraiser for us in 2018, you can go back and read that sentence again.

December was a month where the friends of the CTSF invested in the honor and memory of our kids. You invested in a future without this crappy disease. You invested on behalf of: Eli, Ali Jean, Mackenzie, Alyssa, Krystie, Grayson K., Grayson L, Dakota, Cora, Sabrina, Elise T, Elsie R, Brennan, Nikko, Drew, Charles Lee, Owen, Hunter, Dylan, Gavin, Lexi, Hailey, Riley, Nathan, Rachaeli, and Emma. Facebook donations don't tell me what child they are for, so please forgive me if I missed someone.

That's just too many kids. This has to stop.

You also paid tribute to Don Warlick, Natalie Barnes, and Michael James Beacham. All three are now part of the loving CTSF family.

We got paid by Facebook for most of the Giving Tuesday funds, except for the match which takes forever for some reason... but I will happily wait. January is off to a good start.

For the kids and their families still with us and battling this disease every day, I'm doing everything I can to make sure that you have more options than in the past. And for those kids (like my little Krystie), that have already entered into Paradise, I know they will collectively guide the CTSF this year. 2018 has amazing potential.

Thank you, and God Bless you all.

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.