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
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.
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.
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
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 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 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 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 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 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 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, 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.
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 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...
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.....
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......
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.....
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 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 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 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......
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.....
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 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 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 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.
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.
Tay-Sachs book written as part of Gold Star Award for Girl Scouts by Katelyn Foy Tay-Sachs Disease What It Is All About.
Tay-Sachs Awareness Video - see Dakota and her friends Tay-Sachs Pretty Girl Portraits Video by Eric Fier.
Have you ever heard the expression "One in a million?" I am sure most everyone has.I'd like to try and explain what One In A Million means to me.
The Cure Tay-Sachs Foundation is very grateful you decided to donate and we thank you for your generosity. Your donation will be used to support research to find a cure for Tay-Sachs disease.
The Cure Tay-Sachs Foundation is exempt under Section 501(c)(3) of the Internal Revenue Code, making this gift tax deductible to the fullest extend permitted by law.
Please click the PayPal button to make a donation today! You can donate using a credit card - without a paypal account - by following the instruction on the paypal system (lower left). Or, if you prefer, please send your donation (payable to the Cure Tay-Sachs Foundation) to the address below.
