Fighter Mom Profiles
A Fighter Mom is a parent who not only manages her child's disease or health condition, but who wants to raise funds, generate publicity, advance research, and work with Congress to defeat the disease itself. Below are profiles of some true Fighter Moms!
Holly Bolton
Holly and her husband John from Huntersville, NC have a daughter and a son, both with spinal muscular atrophy (SMA). Their daughter, the older child, has Type III. Their son, Jack, has Type II. The Boltons started a chapter of FightSMA they call Eleanor and Jack's Buddies / FightSMA Carolinas. Since forming the chapter they have made trips to Washington to meet with Representative Sue Myrick, Senator Elizabeth Dole, and Senator Richard Burr. Additionally, they have advocated for extensive coverage of SMA in the local Huntersville media. They have also proactively enrolled their daughter in clinical trials.
Michelle Calise
Michelle and her husband Mike, both of Cranston, RI, formed Corinna's Angels after their daughter Corinna's diagnosis of Type I SMA. Since then, Corinna's Angels has faithfully supported SMA research through a number of creative events including a golf tournament, a motorcycle run, dance and auction, and art auction, and they do it all with an amazing "can do" attitude. For a little insight into Michelle and her family's courage you can read their Fight SMA family spotlight.
Kris Cueter
Kris and her husband Joe have been raising money for SMA research since 1999 after their son Joshua's diagnosis. Though they stay busy with Joshua and their daughter Erin, they have held eight 5K races they call the Joshua's Buddies 5K Run/Walk/Roll that have been very successful. They have also done wonderful work lobbying. Michigan Senator Debbie Stabenow agreed to sponsor the bill in the Senate after meeting with the Cueters. Kris and Joe also eagerly mentor and encourage families in their community.
Laurie Elliott
Laurie and her husband, Duncan, founded the Tampa chapter of FightSMA, Hannah's Buddies. Laurie and Duncan host a number of fundraisers for the chapter including a SMAsquerade event and an annual golf tournament followed by a concert at the House of Blues in Orlando courtesy of John Bell, family friend and lead singer of the band Widespread Panic. The first golf tournament/concert in 1999 drew 75 golfers and a sold-out crowd at the concert. The tournament now registers over 250 golfers, and the concert continues to be a sell-out. Laurie and Duncan also lobby in Washington and raise awareness through the media. The Elliotts have raised critical research dollards through the years since Hannah's diagnosis. They have three children, Hannah, Annie, and Gigi.
Maureen Higgins
Maureen heads the FightSMA chapter in New Jersey that she and her husband Bill started after their son Patrick was diagnosed with SMA. Maureen and her amazing committee have put a lot of work into making their chapter successful. They have held SMAsquerades, hosted a fun FightSMA Rubber Duck Race, and attended the FightSMA Annual Conference. Maureen, Bill, Kelly, and Patrick also regularly meet with their Representative and Senators to help lobby for SMA.
Tracy Lacey
Tracy is the head of the FightSMA Canada chapter, Tori's Buddies. Based in Ontario, Tracy and her husband Shawn have been fighting SMA for 7 years. Their first initiative after their daughter's diagnosis was a mailing to friends, family, and colleagues, and this quickly grew into very successful event. Tracy was very busy in 2007 with a gala and a BBQ sponsored by Direct Buy, and she and her husband are now pushing for Canadian awareness of SMA. In October of 2007, FightSMA Canada held a conference to educate families about SMA.
Stacy Saville
Stacy and her husband Bill's daughter Morgan was diagnosed with SMA on a Friday, and by Monday Stacy was on the phone with a reporter trying to get SMA in the news. She followed up with an auction that raised thousands of dollars for SMA research. In 2005 Morgan lost her battle with SMA, but Stacy has continued fighting for her cause. Morgan's Buddies has held a number of very successful events and they continue to raise support from the Virginia Beach community to fight SMA.
Martha Slay
Martha, president of Fight SMA co-founded the organization with her husband, Joe in 1991. She has since helped the nonprofit raise millions of dollars for spinal muscular atrophy research and grow into an international organization. Martha is also Fighter Mom's founding "Mom".
Donna Sperry
When Donna and her husband Jay realized their daughter's beautiful face was slowly wasting away and there was nothing they could do to stop it, they decided to fight back. Fifteen year-old Kelly Sperry has Parry Romberg disease, a genetic disease that causes a wasting of the muscle and flesh of the face. Donna and Jay founded the Parry Romberg Foundation, whose mission is to develop and provide resources for research, advocacy, education and support for those affected this rare, cruel disease. Donna is also Colorado director of Bully Police USA, where she fights against those who are cruel to children with "differences".
Carice Smith
Carice's son Andrew was diagnosed with SMA in 1993, and when he reached first grade Carice and her husband Wayne began her work with FightSMA to raise money through the Strike Out SMA Bowl-a-Thon. Her efforts have been very successful bringing in a great deal of money in the eight years they have held the event. Carice and her family have also made trips to Washington to lobby, and they have met with Virginia congressmen Eric Cantor to help spread their message.
Amy Stein
Amy's daughter Amanda was born with Type I SMA. Amy and her husband Scott formed the Alabama chapter of Fight SMA, and though their daughter passed away in 2006, they have continued to be huge activists for SMA. The Birmingham chapter was the birthplace of the innovative SMAsquerade events which are now hosted by many FightSMA chapters nationwide and bring in huge revenue. Additionally, Amy is a regular attendant at the FightSMA annual conference where she continues to learn all she can while working to enlist congressmen and senators in the fight.
Edibell Stone
Edibell and her husband Todd's two sons, Nicholas and Elliott have been diagnosed with Myotonic Muscular Dystrophy, a genetic disease that causes muscle wasting in the face, neck, limbs, and internal organs including heart, lungs, gastrointestinal system and the brain. Since her sons' diagnosis in April of 2007, Edibell has brought in significant funding for MMD research. Through the nonprofit organization she and her husband founded, The Stone Circle of Friends, they have also created educational brochures and informative literature about MMD. The Stone Circle of Friends has a goal of expediting a therapeutic intervention or cure for MMD.
Jen Sutton
When her daughter was diagnosed with SMA, Jennifer drove from her home in New York to FightSMA's Richmond headquarters for a planning meeting and came home to start her own fundraising efforts. In their first year, Jennifer and her husband Jim held 4 events and raised great support from the community. Jennifer is the head of Shannon's Buddies / Fight SMA New York.
Erin Weisner
Based in New Mexico, Erin Weisner runs the FightSMA chapter Desiree's Buddies. Their chapter is growing in leaps and bounds, and Erin and her husband Chris have put in a lot of work to make their bingo nights and other events a success. Even with 5 kids Erin made time this year to host the chapter's first ever golf tournament that drew over 100 players to support SMA research. Erin has also pushed a big publicity campaign throughout New Mexico to display facts about SMA on billboards.