Cure SMA is dedicated to the treatment and cure of Spinal Muscular Atrophy (SMA), the number one genetic cause of death for infants. They fund groundbreaking research and provide families the support they need for today.
In Madison, Cure SMA is holding a fundraising Walk-n-Roll on Sunday, Sept 22 from 10:30am - 2:00pm at Brittingham Park (829 W. Washington Ave). Our own Leani, Nichole and Dwight are participating, can you support the cause? See the event flyer in the foyer or click here
Here's a note from Leani's mom, Nichole:
"A few months after Leani was born, she was diagnosed with Spinal Muscular Atrophy or SMA. We were told the average age babies with SMA live to is 8 months and only 5-10% of them live past the age of 2 years. We were also told that she would continue to loose all her muscle movement and only be able to blink if she was able to live to age 2. But Leani and her spirit had much different plans! She will be celebrating her 4th birthday next month and as you can see, every Sunday she is moving all her muscles & continues to gain strength every month.
All the movement you see in Leani is made possible by the medication she receives during her 4 annual trips to Chicago. The name of the medication is Spinraza, which was the 1st treatment EVER for SMA. All the initial funding for the research for this medication was made by the Cure SMA organization back in 2003 - 2006 before we even knew Leani would be born. Cure SMA has donated over $75 million dollars into research for a Cure. They also provided us with a huge box of toys that Leani was able to hold herself to play with, a car bed for travel (to help her breathe easier than a regular car seat) and tons of education about the disease when she was 1st diagnosed.
We are grateful for her spirit, that she is still with us, she is still moving and we are grateful that Cure SMA made all the research for this treatment medication possible. But there is still more work to be done, as you can see Leani still lives with many challenges and that is because there is still no cure. The Cure SMA organization is determined to change this and we hope you will be part of that.
If you are interested in being part of finding a Cure for SMA, here are the ways to be part of the Madison Walk-n-Roll: Please contact me, Nichole (Leani's mom) at 217.316.4901 and I can direct you whichever way you would like to participate.
1. If you are a business owner or your boss at your place of work would like to be a corporate sponsor, this is a tax write off to a charitable/not for profit organization & advertising promotion for the company.
2. Donate goods, gift certificates or service for the silent auction.
2. Sign up to take part in the Walk-n-Roll and be part of Leani's team. This is NOT an athletic competition; a short, slow walk (or roll) is all that is necessary. You and Leani will receive matching T-shirts and your entry fee goes towards Leani's fundraising goal. ($30 for adults, $15 for kids over 3 years)
3. If you're not able to take part in the Walk-n-Roll (or don't want to skip church), Leani's team is also taking donations towards their fundraising goal.
4. Volunteer at the event! (No money or walking necessary!)
Thank you all so much, Nichole Fritts."
Dwight, Nichole and 5-month old Leani (she's almost 4 years old now!)