The Scramble is THIS WEEKEND! We can't wait to see everyone.
Golfer Registration and Sponsorship Opportunities are closed. Please feel free to stop by and join us for a day of fun, kids activities and games, raffle, silent auction, lunch, dinner and a live band!
Purchase lunch, dinner, t-shirts, raffle tickets on our site for the event.
ABOUT THE FOUNDATION
Gianni Strong was created to raise awareness of Spinal Muscular Atrophy. A disease we had never even heard of (let alone knew we were both carriers of) until our son’s diagnosis. It is hard to put into words what it is like to be told your child has a degenerative neuromuscular disease. Devastation and desperation sparked a fire to do anything and everything we could to give our child the life he deserves and to cure SMA.
Our mission is to raise awareness of Spinal Muscular Atrophy and to help fund research and clinical trials. All money raised will be donated to The Research Institute at Nationwide Children’s Hospital for SMA research and clinical trials. We feel blessed to partner with Nationwide Children’s! We are so thankful for the wonderful care Gianni is receiving there and the incredible things happening at the Research Institute & Center for Gene Therapy. We know that big things are coming and are so hopeful to see what the future holds for our boy. Thank you all for the love & support. Together we can #curesma!
Spinal Muscular Atrophy is a vicious, unforgiving disease that, if untreated, will eventually affect every muscle in a person’s body. Gianni has the mildest form of SMA (type 3). Our sweet boy, Gianni Matthew was diagnosed with Spinal Muscular Atrophy (Type 3) just two days after his 3rd birthday. At diagnosis, Gianni had severe constipation and visible tremors, especially in his hands. He was constantly tripping and falling. He was unable to climb stairs or jump and had no reflex response.
Gianni began treatment in September of 2018, shortly after his diagnosis. Spinraza (a drug that has only been on the market for 3 years) has helped to slow disease progression in our baby and there are more drug options on the horizon. There is now hope for families affected by this devastating disease, that has historically been the #1 genetic cause of death in infants. We are so grateful to live in a time with such incredible scientific breakthroughs!
Thanks to Spinraza and weekly physical therapy, Gianni has made significant increases on the Hammersmith (a physical therapy assessment given to evaluate his progress after treatments) and he has gained the ability to JUMP! This is HUGE...children with SMA typically never have the ability to jump.
We are so thankful for this lifesaving drug and what it has given our family. But it is not a cure, it’s a treatment that requires spinal injections every 4 months for life. Gianni still falls a lot and cannot climb stairs independently. He still has no reflex response. We can see Spinraza wearing off halfway through the treatment cycle, as Gianni’s tremors return and his legs give out with more frequent falls. Every day this disease is waging war on our baby’s little body and every day we will continue to fight for a cure.
SMA is an autosomal recessive genetic disorder affecting the part of the nervous system that controls voluntary muscle movement. The disease is characterized by progressive breakdown and loss of the nerve cells, called anterior horn cells, in the spinal cord. The spinal cord is responsible for sending messages from the brain to other parts of the body. As the nerve cells breakdown, the brain is no longer able to send messages to the muscles telling them to move causing the muscles to become weak and atrophied. At first, the muscle weakness is most noticeable in the legs, but as time goes by the weakness may spread into the arms, trunk and neck.
SMA is an inherited condition that occurs in approximately 1 in 10,000 people. It is estimated that one out of every 40 to 50 people in the general population is a carrier of SMA. A carrier is a person who has one functional copy of the SMN1 (Survival Motor Neuron) gene and one non-functional copy of the gene. Generally, a carrier has no symptoms of muscle weakness because the normal gene compensates for the non-functional gene. A carrier has a 50% chance of passing the non-functional copy of the gene to his/her children. A couple is at increased risk of having a child with SMA when both parents either have SMA or are carriers of the condition. If each parent is a carrier of SMA, there is a 25% chance to have a child who is unaffected and is not a carrier, a 50% chance to have a child who is a carrier, and a 25% chance to have a child with SMA. Approximately 95% of people who have a clinical diagnosis of SMA will be missing both copies of the SMN1 gene due to gene deletion. This was the case with Gianni.
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