Your Hosts for Champions for a Cure:
In February of 2001, Joe and Mary McHale took their gurgling, smiling, six month old son Danny in for a checkup. After ten minutes with the physician, they were informed that their happy little boy had a neuromuscular condition called Spinal Muscular Atrophy, and it was terminal. When Joe and Mary asked what could be done for little Danny, the physician said: “Nothing. Take him home and love him in the time you have left.” He wasn’t expected to see his first birthday. Unwilling to accept this prognosis, the McHales called “Families of SMA” that afternoon. They were told: “Yes, there is hope.”
Soon after, Connie Book, a member of the McHale’s church, learned of Danny’s diagnosis. Although she had met the McHales only once, she really wanted to do something to help. She offered to host an evening of music and put together a few auction items. She invited friends and neighbors to join in. That night, back in June of 2001, more than 50 people came together in the Book’s backyard. They raised $7,500 for FSMA to help further the research and development of a treatment.
That little event turned into a second event. In July of 2002, Michelle and Nick Nicholas offered to host. Over 100 people came together and raised an amazing $18,000. That night, Mary and Don Wheeler came to support Danny. Weeks later they learned that the toddler daughter of their closest friends, Andris and Nancy Dindzans, was just diagnosed with SMA. The Wheelers introduced the Dindzans to Joe and Mary. After a few tearful meetings, Nancy and her family joined the fight.
In 2003 the event outgrew back yards. “Concert for a Cure” was officially born! Now, with a caring and talented crew of volunteers, the “Concert for a Cure” event has turned into an annual event. In 2003 the event raised over $42,000, all going to find a cure! As word spread of the special evening, 2004’s event was destined for success. Over 230 people attended and the event raised over $63,000.
Through “Concert for a Cure” announcements and local publicity, Gene and Marilyn Andrade, whose granddaughter Isabella had been recently diagnosed, learned of the event and joined forces in 2004. The McHale's have realized there are many families in the SF Bay Area whose lives have been affected by this disease. The annual “Concert for a Cure” events are marked by a sense of magic, support and hope to make a cure a reality for Danny, Ariana, Isabella, and all of the children in the world afflicted with SMA.
It has been an amazing fourteen years since the McHale's were told of Danny’s diagnosis. Danny is now 14 and a freshman in high school. Cure SMA, a volunteer driven organization, has worked tirelessly to bring researchers and physicians together to find a cure. Danny has participated in two clinical drug trials funded by FSMA, and is currently performing tasks he was never expected to do. Ariana has participated in one of the drug trials and is also showing signs of improvement. FSMA, with your help, is well on their way to developing a drug treatment which will lead to a cure.
Andris and Nancy Dindzans found out their daughter Ariana had Type III SMA when she was 2 years old. Children with Type III SMA are generally able to stand and walk initially, but usually with some difficulty. They fall more frequently, may not be able to run or climb stairs, and struggles getting up from the floor or from a bent over position. As the disease progresses, they gradually lose physical abilities to varying degrees, and encounter more health issues, such as scoliosis and respiratory strength.
In June, 2004, Nancy, Andris and their two daughters, Maija (unaffected by SMA) and Ariana, attended their first Families of SMA (now Cure SMA) Conference in Schaumburg, Illinois. We were all profoundly impacted by the conference. We met many of the SMA children and realized that so many people were brought together in fellowship by the desire to cure this disease.
Nancy and Andris were encouraged and uplifted after attending the conference and talking to many of the other families affected by this disease. Cure SMA is the largest international organization dedicated solely to eradicating SMA by promoting and supporting research, helping families cope through informational programs and support, and educating the public and the medical community about SMA. The annual Cure SMA conferences allow families and professionals’ hands-on techniques and family-to-family support, while also giving the children a great opportunity to make new friends and have a great time.
Ariana turns sweet 17 in May. She used a mobility scooter to assist her from age 5-12. At age 12, she required a power wheelchair full time--and rediscovered her freedom and independence! Ariana had a successful spinal fusion surgery in 2015 to correct her worsening scoliosis. She is now a Junior at California High School, and loves playing on the BORP Shockers power soccer team in Berkeley every weekend. She enjoys the competition and improving her soccer skills, but mostly she relishes being part of the team. Ariana also loves her cat, Zoe, flowers, going on "photography strolls" and creating art.
The Dindzans are anxious to get Ariana started on Spinraza, the first ever FDA approved treatment for SMA, sometime in the first half of 2017 (the sooner the better)!!
Ariana says, "I really want to find a cure for SMA, not just for me, but for everyone who has SMA." Cure SMA and the research they are funding have really given us hope that a cure may be found to keep Ariana as healthy as possible, and give hope to so many others who are also fighting this disease.
More of our Buddies!
Piper and Wayland: There is no other experience in the world as wonderful as that moment when a doctor first places your child in your hands. Your hands cradle, sooth, hug, pray for and caress every inch of your child. The hands of a parent are intended to protect a child.
These are the feelings we had when our son Wayland was born March 9, 2003 and our daughter Piper was born April 15, 2005. In spite of the these feelings, our hands could not protect our children when they were both diagnosed with Spinal Muscular Atrophy,
SMA is a genetic disorder that not only robs your child of their lives, but ties a parents hands meant to protect them. Our hands could only cradle and hug Wayland
for five short months and to hold on to Piper for seven.
While our hands were unable to fight SMA then, we use them now to fight against this genetic killer. So we now ask you to lend a hand in this fight through your generous donations to find a cure.
Jake and Courtney West
Angel Babies Wayland and Piper
Bella: At just 15 months old, our bubbly, bright-eyed blond Isabella was diagnosed with Spinal Muscular Atrophy, Type II. She was a good sitter, but never achieved the ability to crawl, stand or walk.
Our first 2 years after diagnosis were spent in a whirlwind of doctor appointments, meetings with nutritionists, physical therapists, building a therapeutic pool, acquiring new equipment, traveling to Madison WI, drug trials in Salt Lake City and participating in national FSMA conferences. We became avid fundraisers to fund the cure that they promise is close at hand. Jeff joined the FSMA board in 2003 and Melissa serves as the Treasurer of the Minnesota Chapter. We enjoy traveling to SMA fundraisers all over the country and have had a very special connection with the Northern California FSMA Chapter and the Concert for the Cure. Bella’s Grandpa Gene Andrade assisted with some of the fundraising activities before his passing in November of 2006. The Concert for a Cure is a wonderful, well-organized evening of fun to benefit these special kids. We all love traveling out to the Bay Area to see family and attend the Concert for a Cure. Special thanks to our family in California – Marilyn Andrade, Jolene and Bob Auen, and Shari and Darrin Downum for their continued support in the pursuit of a cure for SMA! A big applause for the McHale and Dindzans families and their dedication to the Concert for a Cure’s continued success!
In February 2007, Bella became a big sister to Nicolas (SMA-free thanks to PGD technology). She loved to sing to him and hold his hand.
Bella, now a very social and active 11½ yr. old, loves the freedom of her power chair. She can chase Nicolas and us around with ease! Bella's keeping busy with physical therapy, swim therapy and school. She will start 6th grade in Minnesota this fall.
Kudos to the concert supporters who make this event a success year after year, and who bring hope to all kids like Bella.
Jeff, Melissa, Bella & Nicolas Andrade