When Lizzie Chamberlain of Jacksonville, Ill., was 2 years old, her physical development relative to other children began to plateau — and then decline. Lizzie received a diagnosis of type 3 spinal muscular atrophy (SMA).
Today, a decade later, Lizzie is both a precocious pre-teen and a passionate advocate for herself and others living with neuromuscular disease. That’s why, according to Lizzie’s mom, Lori, the 12-year-old has found an extended “family” and a higher purpose with the Muscular Dystrophy Association. Lizzie has formed great friendships and memories at MDA summer camp, and this past year she proudly served as the MDA 2014 Illinois State Ambassador.
But Lizzie’s favorite MDA activity is participating in the annual MDA Muscle Walk.
With more than 150 events planned in 2015, Muscle Walk is the largest, most inspiring event of its kind to create hope and progress in the fight against muscle disease. It unites communities — children, adults, families, volunteers, sponsors, MDA partners — under a common goal: to raise money and awareness that will fund research and support services that directly benefit MDA families. Participants find hope while fighting back, knowing they’re helping create a world free of the harmful effects of muscle disease.
In addition, Muscle Walk events offer MDA families a chance to connect with others who understand what they’re going through. Lifelong friendships are formed and lots of fun is had when everyone comes together to fight back. “The Muscle Walk isn’t just walking,” Lizzie says, “it’s getting together and doing a bunch of activities, like eating popcorn, face painting and a bunch of other cool stuff.” A gifted musician, Lizzie even sang Bruno Mars’ “You Can Count on Me” at the 2014 Muscle Walk in Springfield, Ill.
While MDA Muscle Walk offers kids like Lizzie the chance to enjoy just being kids, and gives MDA families a great excuse to reconnect, the true, larger purpose of the event is not lost on participants and organizers.
“One of the big reasons we do the Muscle Walk is for the hope that there will be cures, and to let Lizzie know she isn’t alone,” says Lori Chamberlain. “She’s not fighting this battle by herself.”
Fundraising made easy
|Iris Hampton and her husband, Charlie
In communities throughout the country, Muscle Walk offers a non-competitive, fun opportunity to make a real difference for people fighting muscle disease. Doing so is almost entirely dependent on participant fundraising to drive results — which invites the question: Where does an interested participant begin?
Becoming a great fundraiser isn’t something many of us are born knowing how to do, but like learning to ride a bike — or using assistive technology — it can be mastered with dedication and practice. Plus, MDA staff are always willing to help.
To that end, local MDA staff are available in all of the communities where MDA Muscle Walks take place. They help participants reach established goals, find and work with sponsors in some cases, create event T-shirts and other incentives, and even fundraise through social and local media. MDA readily shares these and other resources and tips and helps participants with fundraising in any way it can.
“The most successful fundraisers use various ways to raise money,” adds MDA Muscle Walk National Director Karen Abrahamson, “and there’s even an app for that!”
When an individual or a group signs up for a Muscle Walk, they receive materials to help them plan their fundraising campaigns. Participants are encouraged to customize their online fundraising pages and share personal stories to reach and engage donors, many of whom include friends, family members and people in their community. For more support, as Abrahamson notes, Muscle Walk participants also can download the free MDA Muscle Walk app. Available through both iTunes and Google Play, the app provides users with fundraising tips, an event countdown clock and a progress chart to track and update fundraising on the go.
But the Muscle Walk fundraising page and app are just two tools among many when it comes to fundraising.
For instance, Iris Hampton, who lives with ALS (amyotrophic lateral sclerosis), and her husband, Charlie, used social media, specifically Facebook, as their primary fundraising tool in preparation for the 2014 MDA Muscle Walk of Charleston, S.C. The couple’s personal Facebook fundraising strategy had two main steps: First, they used Facebook to circulate and promote a video supplied by MDA to attract general interest; and second, they issued follow-up personal appeals.
For step two, the key to the success of personal appeals, they say, was challenging their followers with specific, goal-oriented time or dollar-amount requests. For example, in one of Charlie’s posts, he stressed “today” as his target for donations, regardless of amount:
Good Morning to all in my friend list. Iris’s MDA Muscle Walk is this Saturday. I am now driven more than ever to have her reach a $2,000 goal. She is only $254 from that goal. … I am reaching out this one last time to everyone who has not already helped, to reach into your heart TODAY and help Iris go to the walk having raised $2,000. No amount is too small or too big. Just please do what you can and do it today.
And they did. On the strength of this and other specific appeals via Facebook posts, the Hamptons raised $2,491 — nearly 25 percent more than their original goal.
After the event, Charlie also sent thank-you notes to each person who donated to their MDA Muscle Walk fundraiser:
Saturday was a really good day at the MDA Muscle Walk in Charleston. Eight friends and family went with Iris and walked for her. I was so very proud of her courage and so thankful to MDA for all they do to help her along her journey. I pray they find a cure for ALS and thank MDA for their efforts in searching for it.
This type of follow-up thank-you note helps convey the genuine appreciation Charlie and Iris Hampton have for their supporters. Plus, people who feel appreciated for their contributions are much more likely to respond positively when asked to donate again in the future.
Of course, yet another novel way to garner support and donations year after year is to host an event yourself in advance of a Muscle Walk.
Led and inspired by 10-year-old Hayley Nilsen, who lives with Charcot-Marie-Tooth (CMT) disease, the Nilsen family has created its own Muscle Walk Team — “Hope for Hayley” — which each year raises funds for the nearby MDA Muscle Walk of the Twin Cities by hosting a “Hoops for Hayley” three-on-three basketball tournament. Last year, the active fifth-grader, whose favorite sport is of course basketball, and her family raised more than $8,000 from roughly 400 people who participated in the tournament. Combined with their other fundraising activities, the “Hope for Hayley” team raised a whopping $10,331 for their Muscle Walk.
Yet another effective Muscle Walk fundraising approach is to actually show prospective donors where their money is going and why it’s so important. In Texas, where they do everything big, Mike Rowlett has perfected this technique. The owner and CEO of Womack Machine Supply and a resident of suburban Dallas-Ft. Worth, Rowlett leads the Muscle Walk fundraising team that currently boasts the highest team total nationally: $129,537.
Rowlett also lives with facioscapulohumeral muscular dystrophy (FSHD) and says he is deeply appreciative of the support he has received and seen others receive through MDA. So starting Team Womack back in 2004 to raise funds through organizational events to support Dallas-Ft. Worth’s “Great Walk and Wheel,” a predecessor of the Muscle Walk program, was a great way to give back, he adds.
Rowlett makes sure his volunteer team members are treated well and feel appreciated. Womack Machine offers matching funds for all the charities his employees are involved with, including the MDA Muscle Walk. And after each Muscle Walk, he and his wife, Beverly, take their team out to brunch. But Rowlett doesn’t stop there.
“I have taken a group of employees and donors to [MDA] summer camp for an evening,” Rowlett says. “We take barbecue and grill hamburgers and wait tables so that the counselors can sit down and eat one night, rather than waiting on the kids.”
|Mike Rowlett and his Muscle Walk team
These outings also connect Rowlett’s potential donors with the kids attending those camps, and the children’s collective spirit tends to leave a lasting impression, Rowlett says, adding, “Everyone who we’ve ever taken to camp has become a consistent donor to our Muscle Walk.”
Why donations matter
MDA provides access to life-changing, and often lifesaving, resources to help people living with muscle disease: from clinics to support groups to cutting-edge research pursuing new treatments and cures. But only with the support of these and other dedicated Muscle Walk participants and MDA supporters is MDA able to continue providing such critical services. Consider the following:
- Because of past financial support, more new disease-fighting drugs in development are expected in the next five years than in the previous 50 combined. Breakthroughs are on the horizon.
- MDA clinics are in more than 150 locations, including many top-rated hospitals, and help nearly 40,000 people every year through team-based care and services.
- Each year, the MDA summer camp program provides more than 3,500 children with neuromuscular disease the opportunity to have fun new experiences while gaining independence and confidence.
- MDA is advocating for policies to help more young adults living with muscle disease make the transition to independent living.
Once you drill down, here’s how individual donations through Muscle Walk and other MDA programs help:
- $53 provides one day of medical supplies at MDA summer camp;
- $100 provides one support-group session;
- $150 provides a physical therapy consultation at an MDA clinic; and
- $800 provides a week at MDA summer camp for one deserving child.
Most people who participate in Muscle Walk will not be able to take a group of prospective donors to an MDA summer camp, like Mike Rowlett. But if it helps make sense of and provide motivation for your fundraising, just think of the real-world value of the money you could raise through your network. Let’s say you’re able to raise $400. In practical terms, you will have raised more than enough to help pay for a whole week of medical supplies at one MDA summer camp. Or, if you prefer, think of that money raised in terms of four support-group sessions that will help individuals and families deal with the social, medical, psychological and other challenging aspects of living with muscle disease.
Yes, each and every Muscle Walk is a feel-good event, an MDA family reunion of sorts, that breeds infectious optimism. But it’s also so much more than that; it’s a platform for families to fight back against muscle disease by fundraising for cures and staying engaged with the broader MDA community.
Here’s an all-too-common sentiment: “MDA Muscle Walk is a great program, and I’d love to participate or even start one in my community, but between medical appointments and other hassles related to my disease [or my loved one’s disease], my life is already overwhelming without adding something new.”
If that sounds familiar, you’re not alone. But consider that many families in your same position have found that the positive personal rewards of being a part of a Muscle Walk far outweigh the associated challenges. For example:
- Lizzie Chamberlain was upset that she didn’t have any friends “like me.” MDA summer camp introduced her to new friends and the Muscle Walk gives them a chance to get together and be part of a positive experience that actively raises money to better their lives.
- Hayley Nilsen found that inviting basketball team members from her team and her sister’s team to join Muscle Walks built spirit and friendships.
- Mike Rowlett got a daughter-in-law. His involvement with Muscle Walk led him to meet Carolyn Minnerly, MDA’s national director of summer camp and support services. Minnerly invited Rowlett’s son, Tracy, to volunteer at summer camp, and during his second year volunteering at camp, Tracy met and fell in love with another volunteer, Whitney. The rest, as they say, is history.
MDA’s Karen Abrahamson adds that Muscle Walk involvement “is a powerful way for newly diagnosed families to engage with the muscle disease community, get to know other families, raise funds to help fight the disease and help others.” For families who have been involved with MDA for many years, it is also a way to share their hard-won knowledge of living with muscle disease with those who are just beginning.
It’s also an easy and fun way for families’ friends and neighbors to fight back in their honor. When family members, friends and neighbors ask what they can do to help, you can tell them: Join Muscle Walk and help raise funds to support the services that are helping us today and the research that is going to find treatments and cures tomorrow.
To learn more and get started today visit mdamusclewalk.org.
You, your family and friends can participate in the MDA Muscle Walk for a powerful way to help people living with neuromuscular disease. Events are held all over the country and throughout the year.
When you sign up, be sure to post it on all your social media networks. It’s a great way to get friends to join you and make the day even more special.
To find and register for a Muscle Walk in your area, and access fundraising tips and more, visit mdamusclewalk.org.
MDA Muscle Walks have raised about $26 million since 2011 and $8.6 million and counting by November 2014, with more than 40,000 participants last year alone. Don’t let 2015 go by without joining this remarkable event. Visit mdamusclewalk.org to get started.
Donna Albrecht is a freelance writer and speaker who lives with her family in Northern California.