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???


IntraBio Receives Tay-Sachs and Sandhoff Orphan Drug Designation from the FDA

OXFORD, UK --November 26, 2018-- IntraBio Inc., a late-stage biopharmaceutical company developing novel therapies for rare ("orphan") and common neurodegenerative diseases, announced that the US Food and Drug Administration (FDA) has granted Orphan Drug Designation (ODD) to its lead compound series (IB1000s) for the treatment of GM2 Gangliosidosis (Tay-Sachs and Sandhoff Disease), rare lysosomal storage disorders that are characterized by progressive neurodegeneration and premature death.

IntraBio was previously granted Orphan Medicinal Drug Designation from the European Commission for IB1000s for the treatment of GM2 Gangliosidosis.

This orphan designation provides a number of FDA regulatory benefits, such as a 25% tax credit for the costs of clinical development, a waiver for all prescription drug user fees at the time of marketing approval (approximately $2.5 Million dollars per indication), and 7 years' exclusivity in the US from the date of marketing authorization.

GM2 Gangliosidosis affects an estimated 1:200,000 -320,000 live births and are caused by mutations in the HEXA gene, which disrupts the activity of the enzyme beta-hexosaminidase A, preventing the enzyme from breaking down GM2 gangliosides. As a result, GM2 gangliosides accumulate to toxic levels, particularly in neurons in the brain and spinal cord, leading to cell death and resulting in the signs and symptoms of Tay-Sachs and Sandhoff disease. There is nothing medically available for the treatment of GM2 Gangliosidosis at this time.

Rick Karl, President of Cure Tay-Sachs Foundation commented, "We are so very grateful that parents will finally have an option to treat children that offers hope, where no hope has ever existed before."

IntraBio, with its collaborators, has evaluated the effect of IB1000s in compassionate use studies in over 175 patients, forming the scientific basis for IB1000s to be further investigated for the treatment of 18 indications, including neurodegenerative diseases and lysosomal storage disorders. Future opportunities to develop the IB1000s series in additional indications include Lewy Body Dementia (LBD), Restless Leg Syndrome (RLS), Amyotrophic Lateral Sclerosis (ALS), and Multiple Sclerosis (MS), all of which of have high-unmet medical needs.

IntraBio is currently in the process of applying for multi-national clinical trials with its lead asset (IB1001) for the treatment of GM2 Gangliosidosis (Tay-Sachs and Sandhoff disease), Niemann-Pick disease Type C (NPC), and certain inherited Cerebellar Ataxias (CA).

About IntraBio

IntraBio Inc. is a biopharmaceutical company with a late-stage drug pipeline including novel treatments for common and rare neurodegenerative diseases. IntraBio's platform results from decades of research and investment at premier universities and institutions worldwide. IntraBio's clinical programs leverage the expertise in lysosomal function and intracellular calcium signaling of its scientific founders from the University of Oxford and the University of Munich.

IntraBio's management team and consultants have vast commercial experience and a successful track record of drug development in the USA and Europe. Together, IntraBio's team translates innovative scientific research in the fields of lysosomal biology, autophagy, and neurology into novel drugs for a broad spectrum of neurodegenerative and genetic diseases to significantly improve the lives of patients and their families.

IntraBio Inc. is a US corporation with its principal laboratories and offices in Oxford, United Kingdom.

For further information please contact:

Cass Fields

Today, the University of Massachusetts Medical School announced that it was advancing Tay-Sachs research to a Phase I/II clinical trial tentatively scheduled to begin in March/April 2019. This is an enormous advancement for CTSF supporters and represents the culmination of 11 years work for the principal researchers whom we have supported with over $2.2 million dollars in direct grants.

This work, headed by CTSF friends Miguel Esteves, Doug Martin, and Heather Edwards, has already begun the work of manufacturing the Gene Therapy "Vector", which is being made by Nationwide Children's Hospital in Ohio. The CTSF would like to acknowledge the generosity of the Blu Genes Foundation of Canada in allowing this 5-month production process to begin in the last two weeks. The FDA has provided strong guidance up to this point, and the path toward IND (Indication of New Drug) approval looks solid. This will allow the researchers to quickly move from the drug manufacture to the clinical phase of this work... The treatment of real kids.

Many of you have stuck with the CTSF since it's inception. We are grateful and know that you join with us in anticipation of a great outcome from these trials. And, while we have a head start on the costs of the trial itself, it looks like the total cost of the trial will approach $2 million. We still need to raise a big chunk of that.

Today we celebrate with our researchers, our fellow Foundations, UMASS, and all those that have donated to make trials in 2019 possible. Take a brief minute today to say a quick prayer that this effort works in a way that helps heal our kids, both those living today and those yet to be born. And allow yourself to celebrate a little bit too. - Rick

2018 Year End Summary

The work that we did in 2018 brought us to exciting new possibilities for the future. It's hard to say we had a "good" year when we lost kids and more kids were diagnosed. Sometimes it just seems like "new kids just keep coming" every few weeks. But 2018 did bring some hope for both todays kids and future kids who are burdened with this horrible disease. The cause continues and the fight endures for all our kids.

Here are some of the highlights:

  • Eleven years ago your donations funded the early work at the University of Massachusetts Medical School for research. In November of 2007, we sent them $50,000. By January of 2009, that number swelled to $300,000. Much more funding was given from us and other partners , and the rest as they say, is history. Axovant now owns much of the intellectual property generated, and clinical trials on real kids are hopefully right around the corner.
  • IntraBio hopes to trial their IB1000 series of drugs here in the US in 2019. More details to follow as they seek regulatory approval
  • We had our best financial year since 2014 with $355,412 donated!! We had 51 Fundraising efforts, both large and small, and 1811 donations. That's an average of 5 donations per day, everyday. We have a war chest that will enable us to be nimble and to fund the most promising and compassionate investments that present themselves in the future.

So, even though we are dealing with a really crappy disease, we really did have a very good year. We have more hope and more determination than ever to find an end to these diseases. And, for once, the light at the end of the tunnel doesn't feel like the headlamp of an approaching train.

THANK YOU all for your enthusiasm, your support, your donations, and your interest in our kids. On behalf of myself and our entire Board of Directors, we will continue to work hard not to let you down.

- Rick and the CTSF Board

The CTSF would like to acknowledge the second of two very sizable gifts from the estate of Mary Titleman. Ms. Titleman wished these donations to be made in memory of her and her deceased husband's (Daniel Titleman) deceased children, Enid Deborah Titelman and Marcia Barbara Titelman. A special thanks to Greg Doren, Mary's Nephew, who has been managing his Aunt's estate.

God Bless all

Cure Tay-Sachs Foundation

The Cure Is Within Reach!

Since our creation in June 2007, the CTSF has raised $4,620,905 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

2018 Donor Recognition

CURE Level: $5,000+ Donation - Adam and Brianne Anderson, Adam Anderson, Charles & Lori Combs, CTI, Erica Marie, FACEBOOK DONORS, Greg Doren, Isaac's 777 party, Mary Titleman Trust, Micahel W. McCarthy Foundation, Nick Athanasakos, Nicki and Dave Luce, Nike, Inc., Rick Karl , Rosanne Haeussler Williams, Todd and Holly McDonald *** Research PhD: $1,000 to $4,999 Donation - Bader Abdullah, Brian Maloney, Bruce Steiger, Bryce & Amy Anderson, Charles Barrington, David Gertner, David & Christine Novicky, Derrick Stidham, Douglas Bivona, Dozier Hood, Duane Smith, Felicia Kemp, Frank Buonanotte, James & Peggy Bowman, Jenni Schoppers, Julie Rabinowitz JUMP Fundraiser, Kyle & Mindi Zollar, M.H.B. Dental Corp, Megan Herman, Mona Vogal, Patricia Beaudry, Rosane and David Gertner,, Scott Metzger, Sunset Cove Resort , Thomas Socie, Yunming *** Research: $500 to $999 Donation - Alex Gertner, Allen Rabinowitz, Bernardo Motta e Silva, Bob Bihn, Cheryl & Keith Babo, Chip & Lori Combs, Corinne Cooley, Diana Metzger, Ellen Karl, Erica Meiners, Game Day Apparel, Gerry & GeorgiaTemmen, Greg and Kimberly McDaniel, Harrison's Roast Beef, Jenifer Cavazos, John & Mary Woelfel, Jonathon Rabinowitz, Julie Hooper, Karl and June Reidel, Ken & Julie Bihn, Kevin Coombes, Loretta Perodeau - Hannaford 8012 , Mary Little, Masad & Hanan Shaukat, Rosewell Bicycle, Inc, Shanda Johnson Taylor, Shari Stengel, Susan Mitchell, Susan Scheps, Tyler Mace, United Way of Lorain Ohio , United Way- Southeast Michigan , Wells Fargo *** Treatment Provider: $250 to $499 Donation - Adam & Lindy Glaser, Alan and Lindy Glaser, Alica Richarte, Art & Barbara Nehr, Bank of America, Brian and Colleen Plick, Brice & Marilyn Buehler, Cameron River, Carl Di Paolo, Christina Juhasz, Christine Girello, Dave and Natale Wallis, Doug Friar, Elizabeth Masiero, Euclid School, HCA, Jeanne Karl, Jennifer Ingram ATL CAST, Jonathan & Brittany Marigliano, Lindsey Bower, Linn Owen, Micahel and Kimberly Lex Family Fund, National Football League (NFL), Pamela Williams, Sarah Mattingly, Stidham Family Fundraiser, Terry Karl, The Bakers Crust Labedzki, Tony Mitchell, Tullius Chiropractic, Your Cause HCA - Joy Milligan *** Symptom Manager: $101 to $249 Donation - Amazon Smile, Andrew Kransdorf, Angela Neubaum, Austin & Roberta Betts, Benjamin Moore Paint Company, Blue Sky Vinyard , Blue Sky Vinyard Jim Ewers, Brian & Rana Sass, Brian & Sherri Manning, Cathy and Joseph Vicario, D'Aon Lucas, David Presky and John Toman, Diane Ogle Nair, Ervin, Cohen & Jessup LLP, General Atlantic Foundation, George Crenshaw, Goodshop, Jim & Shirley Warren, John Nagengast, Joseph & Colleen Alletto, Kirbie Conrad, Kylie Candy, Lance Freedlund, Lisa Borg, Lowell Tyner, Marion Conte, Mike & June Martz, Nadia Tyner, Nancy & Daniel Terlecki, Nazira Lyrio, Rebecca Stanley, Stacey Saal, Sue and Tim Mahoney, Sue Boldra For Kansas, Sunset Cove Resort , Thrivent Financial Edwin Lehman, United Way of Indiana, United Way- Milwaukee, Yvonne Saavedra *** Jacob Sheep Parent: $100 Donation - Amanda Weaver, Becky & Loren Benson, Brian Brown, Carol Warner, Catherine Close, Charles Barrington, Charles Barrington, Charles Novicky, Cindy Well, Clifton Churchhill, Daniel Bihn, Darlene Wilkinson, David McCollum, Debbie Nolan, Diane Escalante, Dianne Goold, Donna Jakaub, Doug Friar, Ellen Brezic, Emergency Medical Professionals, Eric Besselman, Gabriel Jarczun, Glenn & Janet Traylor, Greg & Yvonne Alburtus, HMI Industries, Jeramy Rushlow, Jewish Federation of Atlanta- Caroline & Randy Gold, John Hambright, Kaitlyn & Kathleen Chambers, Kathleen Andrews, Kay Dirschell, Ken & Corinne Hynes, Kenneth Mattison, Kevin Schwarz, Kevin Scullin, Kim Sterns, MD, Kountry Shanty, Laurie and Todd Kaib, Leland & Jo Ann Reeter, Lisa Wallace, Lowell Tyner, Lynn Fallon, M.R. Norton, Marc Williams, Marcello Czarniak, Marcy & Richard Bern, Margaret and Ron Wahl, Maria Marsh, Melissa Martz, Michael Flahaven, Michael Goldberg, Mike & Val Karl, Miss Elliott, My ARTE LLC, Mylissa Trowbridge, Nan Chapman, Nazira Lyrio, Nydia Perez, Optimal Medical Staffing, Patrica Beaudry, Patricia Beaudry, Predheep Koickal, Ralph and Patricia Martz, Randy Wolff, Rebecca Warren, Richard Miller, Roger May, Scott Cameron, Sharon Storrs, Susan Hilgendorf, Susan McGuire, Tara Keefner, Thomas Maginn, Thomas Scimeca, Travek Inc., Vladimir & Kathy Vekstein, William and Carol Ball, William O'Shea *** Care Provider: $1 to $99 Donation - Alan & Marilyn Sorenson, Alexander Leonard, Alfredo Villao, Alicia Watts, Alyssa Tyner, Amy Anderson , Andrea & Robert Citarelli, Andres Beri, Andrew Jones, Angela Bowens, Angella Jackson, Anita Sethi, Ann McClure, Annette & Roscoe Pershing, Annette Silber, Annie & EC Mazoch, Anthonius Storm, Arlene & Marvin Freedberg, Arlene Fell, Arthur Weisman, Barbara Abramson, Barbara Cappel Green, Barbara Polglaze, Barbara Wuebbels, Bari Goldberg, Becky Warren, Beneivity , Bernard Schettino, Bonnie Rozales, Brendan Doran, Brett & Chantelle Walker, Brian & Sally Hasty, Brian Lawrence, Brian Lindsey, Bridget Barle, Bruce and Sharon Gnandt, Burton & Judith Saltzman, Carlos Coloma, Carlos Martin, Carol Bernstein, Charles & Beverly Maupin, Charlotte Ellman, Christina Souder, Christina Foster, Christine & Douglas Lundwall, Christine Ames, Christine Eby, Christine Georgeff, Clara Dyer, Claudia Schwartz, Connie Goetz, Constance Lee, Corie Rochman, Customink LLC , Cynthia Angell, Cynthia Monteiro, Daniel Espin, Daniel Nicholas, Danielle Sprague, Davey Tree Svc., David & Cecelia Corley, David Gertner , David Gluckman, Deborah Gawin, Deborah Hahn, Deborah Marnien, Dennis & Patricia Danley, Dennis Shay, Donna Glazer , Donnna Gasparek, Doug & Mary Baulding, Ed & Barbara Busi, Edward and Catherine Rawe, Edward Riestenberg, Eileen Bretherick, Eileen Cherwony, Elisabeth Masiero, Elizabeth Masiero, Elizabeth Ross, Eric Christensen, Erica Catherall, Errand Girlz, Estaban Lopez, Esther Cooper, Esther Silver, Fred Villao, Gail Kushner, Gary & Hollie Andrus, Genevieve Arnold, George and Joan Harvey, Gerald & Linda Stanford, Gina Koehler, Grace Endy, Guardian, Harold Jean, Heather Uvino, Heather Wong, Henry Gonzalez, Hilda Bodenstein, Howard Lockwood, Ina Rogers, J Wagner, Jaclyn Guillory, Jaclyn McGillian, Jacqueline Reuter, James Stage, Jametta Johnson, Jane Ahlrichs, Janice Maratta, Janis and Dusty Hancock, Jayne Minham, Jeanie White, Jeff & Heidi Dodd, Jeff Keefner, Jeffrey Keefner, Jeffrey Kumpula, Jenna Francisco, Jennifer Hehman, Jimmy and Pat Sheldon, Jimmy Bueno, Joan Davis, Joann Popp, John Marnien, Jon Marnian, Joseph and Phyllis Miller, Joseph McCaferty, Joy Milligan, Judah Berger, June Martz, Karen Duffy, Karl & June Reidel, Karla Jones, Kathy Shapiro, Katrina Tyne, Kenneth Greenberg, Kerry Bean, Kevin Mingus, Kim Pesses, Kimberly Cohen, Kristen Sobieski, Kristi Reynolds, Laine Fischer, Lana Houghton, Larry Gache, Larry Schecker, Laura Berry, Laura Goldstein Wallenstein, Laurie and Todd Kaib, Leann Garkie, Lesa Brinker, Linda Alvidrez, Linda Feingold, Linda Roth, Lindsey McBain, Lisa Kaffenberger, Lisa Miller, Lisa Wallace, Lizzie Gabbard, Loren and Susan Fickle, Lori Lenhard, Lori Nassif, Lorri Erhardt, Lou Cowherd, Love Like Me. LLC, Luanne Gipe, Lynn Amend, Lynn Holmberg, Madeline Rumker, Madelyn Hudson, Magdalina Duncan, Mandel Jewish Community Center, Marci & Brent Garson, Marcia Crivorot, Margaret Walters , Maria Flemming, Marian Suttles, Marilyn Myers, Marlene Fineman, Mary and Phillip Ciafardini, Mary Arthur, Mary Harrison, Mary Harvey, Mary K. La Tempa, Mary Kenter, Mary Wersel, Matthew Kransdorf, Maureen Fisher, Mcoli Sier, Megan Hansen, Megan Kamm, Megan Lyman, Megan Watts, Melissa Martz, Melissa Romero, Michael Marcial Inc, Michael Rubin, Michele Ellman, Mike & Susan Elizer, Miranda Sheeks, Monica Pietroluongo, Monika Lanciers, Nancy Moylan, Ori & Robin Cohen, Patricia Wicks, Patrick Dearing, Paul & Carol Wagner, Paul & Carolyne Bloch, Paula Maxted, Paull and Patricia Pitzer, Pedro Norohna, Publication Betham Science, Randolf Sprangler, RC and RMK McCallister, Rebecca Mansour, Rene McGerigle, Renee Gerber, Richard & Monica Ferrarini, Richard & Petria Lundwall, Richard & Sue Herman, Richard Etchells, Richard Fares, Robert & Deborah Rosenhaus, Robert & Joan Wheeler, Robert Cherwony, Roberta Rubin, Ron & Betty Hill, Rosemary Pitman, Ruth Neuman, Sagar Mehta, Samantha Gallagher, Sandhya Dantuluri, Sara Owens, Sara Staab, Scott Rosenthal, Sean P. Murphy, Sharat Williams Ganta, Shari Townsend, Shelly Brewer, Sherita Kyles, Sherry Britt, Sheryl Enzweiler, Stacy Stein, Steve Clendenen, Student Services- -- West Chester U, Susan Cropenbaker, Susan Hyman, Susan Pfeifer, Susan Roettgers, Suzanne Gallagher, Suzanne Hummel, Suzanne Keene, Tanya Faber, Tara Keefner, Thomas Johnson, Thomas Freese, Thomas Johnson, Thomas Marable, Tim & Kim Riecken, Tim Gannon, Timothy Brady, Tom & Shelley Goetz, Tom and Barbara Morton, Tony Navarrete, Tracy Langlois, Tricia Batista, Trudy Stearns, Truist, United Way- Indiana, Venk Vallurupalli, Vish Nadaarajah, Walter Lippard, Wells Fargo Employees, Your Cause , Yvonne Rabie *** Donations made in honor of: - allysa, Becky Warren's Birthday, Brielle, Casey and Tommy Pounds, Crystal Rolle's Birthday, Drew A., Drew Anderson's 2nd B-day, Emma, Goldberg Family , Grayson K., Grayson L, Harsha, Hunter Combs 17th birthday, Isaac, Jacqueline Purcell, Jaqueline Purcell, Karen Duncan / Kylan, Katchen & John Sinclair's 40th Anniversary, Kenneth Mattison, KKS, Lindsey Bower, Liz Warren's Birthday, Maloney Family, Maria G, Matt & Valerie Cox , Randy Freed, Sahar, Siri, Susan White's 50th B-Day!, Tricia Rochman's B-day *** Donations made in memory of: - Ali Jean, Annabel Pounds, Brielle Emma Marie Walters, Charles Lee, Christopher Modelewski, Cora, Dakota, Dan Warlick, Devin Purcell, Devon Purcell, Earl Iverson, Elise T, Elise's 15th bday, Emeric, Emma, Enid Deborah Titelman and Marcia Barbara Titelman, Jacob J., Krystie, Kylan Locke, Lexi, Mackenzie, Maria Greene, Marvin Saperstein, Miss Elliott, Namreta, Peg Moffitt, Riley Bear, Roscoe Combs, Ryan, Sabrina Tuleja ***

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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


Tanganil: An easy way to share your experience...

Cure Tay-Sachs Foundation (CTSF) and NTSAD have collaborated with TREND Community to collect information from families and individuals about their experiences using Tanganil, available without a prescription from Europe and indicated for the treatment of positional vertigo (dizziness). It has not been proven to be effective or approved for use to treat symptoms of GM1 and/or GM2 Tay-Sachs and Sandhoff.

  • There is no travel required to take part in this online community.
  • All data shared will be anonymous and de-identified.
  • The data will be used by researchers, doctors, and pharmaceutical companies to better understand how the disease impacts the family, generate ideas for future research and design better clinical trials.

Click the link below to download the TREND Community PDF to read more about this initiative, how it can help and how you can sign up to be a part of this unique way to participate in research.

Here is the link. The instructions to sign up are right at the bottom.

Rick Karl, CTSF


"Holy Cow! Over 2000 people "Like" the CTSF Facebook page now, and our this website has been visited 6000 times in the last 12 months. I'm humbled! It's March 5th, and we have already brought in over $100,000 this year for research. With what we have planned for the rest of the year, you ain't seen nuttin yet! Of course, we plan to write checks for over $800,000 this year. Our funding will see the first Gene Therapy treatment this year, and two other clinical trials on affected children! There will be obstacles, but there has never been..... not even close... this much hope. ALL our hope has been from your help. So, if you have a rich crazy Uncle someplace, now is the time to send him our website address. Our work is never too late for our kids and those kids yet to be born. They deserve a full and happy life. That's why we do this"

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.