Your Hosts for Aloha to the 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 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. In April 2017, Ariana began receiving Spinraza, the first ever FDA-approved treatment for SMA. She has been slowly increasing in strength and stamina ever since! In 2018, thanks to the efforts of her therapists, doctors and parents, she will be getting a sit-to-stand wheelchair, allowing her to stand at will, increasing her muscles and abilities, and allowing for more function and accessibility in her world.
Ariana turns 18 in May, and is a Senior at California High School in San Ramon. She 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. She is looking forward to the next chapter in her life: going off to college and becoming a teacher!
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.
Annie Dooling will happily tell you she’s four years old holding up her four little fingers with a huge smile on her face. She’s very excited to turn five in April. Annie’s parents, Matt and Cathy are excited too. Annie was diagnosed with SMA when she was three and a half years old (Oct 2016). At that time there was no cure and no treatment.
Annie’s doctors were optimistic telling her parents a treatment was expected soon. But soon seemed to take forever. Each day they worried about Annie losing muscle strength and motor neurons that she would never get back. And then two months later a treatment was approved by the FDA called Spinraza. In less than four months, Annie was receiving this medication. It’s a medication she will be on for the rest of her life, or until another treatment is developed or a cure is found. Thanks to CureSMA, Annie’s parents are hopeful.
Matt and Cathy found CureSMA when they were searching for information about the disease online. It was also the one organization recommended by Annie’s team of doctors to access for support and to stay informed of new treatments. They attended their first SMA Conference last year in Orlando, FL. It was informative, encouraging, and overwhelming. It was also heartbreaking to hear about the thousands of children who have passed away because there was no treatment found in their lifetime. The Dooling’s know they are incredibly fortunate to be able to reap the benefits of the tireless efforts of the CureSMA organization over the years. With your help, more treatments and a cure are possible now more than ever. Know that your donations to CureSMA are already making a difference.
Annie is in preschool and LOVES it! She loves her teacher, her friends and her nanny Brittany. SMA does not affect the brain, and children of SMA tend to be very bright. Annie loves swimming, movies and going on rides at amusement parks. She’ll never turn down an offer of vanilla ice cream. Annie is diagnosed as a ‘strong type 2, weak type 3.’ She can stand and take steps if holding on to something or someone for support. But mostly, she crawls to get around. One of the goals of Spinraza is to stop the normal progression of the disease. What’s still needed is a drug that will help these kids gain back strength. Researchers and doctors have already identified exactly what causes SMA. They are so close to finding a cure. Thank you for supporting CureSMA. Thank you for supporting kids like Annie.