The North Jersey Cure SMA Chapter held their 4th annual North Jersey Walk-n-Roll on June 22, 2019 at the Roosevelt Park. Walk-n-Roll is a fun, family friendly event that supports Cure SMA’s mission of driving breakthroughs in treatment and care and providing families the support they need for today.
Families affected by spinal muscular atrophy shared with us why they’re walking, rolling and raising money for Cure SMA.
“We’re here to raise SMA awareness for Theo and all individuals and families affected. We’re here to meet others in the community we can bond with, especially newly diagnosed families. We want to help them and tell them we know how you feel, and everything is going to be OK. We also want to raise money for Cure SMA, which not only supports families with small things like care packages, community events, the conference, equipment rentals etc., but actually make life changing advancements in SMA by directly funding the research that has already led to amazing treatments.”
– Amanda Roggenburg Scafuto, Team Theo
“Cure SMA has been an important organization for me since my nephew, Jayden, was diagnosed with the disease when he was an infant. I am walking this year and every year in honor of his memory. My Jayden passed away last June. I have been participating in this walk since June 2016. My sister-in-law, Anna Auyeung, is the fundraising co-chair and she arranges everything, such as finding volunteers and sponsors. When Jayden was diagnosed with SMA, he was around 8 months old. It affected my whole family greatly because we loved Jayden so much and we knew that our time with him would be limited. I was a first-time mom around the time he was diagnosed. My daughter was 2 months old when we found out about Jayden’s diagnosis. It devastated me because we had plans for these first cousins to grow up together.”
– Susanna Auyeung-Hayes, Team (in Loving Memory of) Jayden
“My daughter Liliana Grace is genetically diagnosed with SMA. I am forever grateful for the awareness that was brought to me by a very special local family. It has meant everything to the outcome of my daughter’s life. Because of this awareness, I requested blood testing for SMA during my pregnancy. Liliana’s father and I both turned out to be genetic carriers. This meant our baby had a 25% chance of having the condition, spinal muscular atrophy. I had an amniocentesis done, and it confirmed that our baby had SMA. To the naked eye, Liliana Grace Meredith was born a perfect baby girl. But luckily, we knew different, and brought her straight to be evaluated. But there is hope for the future of this disease! We decided to walk with Cure SMA because they put tons of money into research, which directly benefits my daughter Liliana, and they are also a tremendous support and a guiding light to families affected by SMA.”
– Denise Meredith, Team Lily and the Meadowlanders
“I am walking in Cure SMA’s North Jersey Annual Walk-n-Roll because my brother Joe has SMA type 2. He was diagnosed at 2 years old. Today, he is 17 and living his best, healthy life. Joe is the most intelligent and appreciative person I know. Not to mention, the strongest. He is currently undergoing treatment and is very determined to find a cure for SMA. Ultimately, we are walking and rolling because we are fighting for a cure for SMA. We want Joseph to have the same privileges as other people his age. We want him to be able to lift his hand to eat, grab a basketball and shoot a hoop, and see him walk. We want him to accomplish all his hopes and dreams. That starts with finding a cure for SMA. We are very hopeful that with recent scientific discovery, there will be a resolution, but we can’t do this without everyone’s support and donation to the cause. Let’s find a cure for SMA and see everyone with SMA take their first steps!”
– Alexandra Lakhman, Team J Walkers
“I’ve participated in the walk for the last 3 years, as well as helping to organize our Walk-n-Roll event. Each year our team, and our event, has grown in size. This has made a difference in community Awareness of the “rare” disease spinal muscular atrophy, and community support in our Advocacy efforts on behalf of Cure SMA. Our Walk-n-Roll event has served as an introduction to our local SMA community for many newly diagnosed families, as well as a show of solidarity among families and individuals who are fighting this disease and supporting each other along the way.”
– Kristen Smith, Team Sweat Equity
By supporting the North Jersey Walk-n-Roll, participants and supporters help fund programs that will continue to change the course of SMA for everyone affected from infants to adults and eventually lead to a cure. The North Jersey Chapter is close to their $20,000 goal. Donate today to help them reach their goal!