The 2nd Annual Party With a Purpose to help Andrew Creighton and FightSMA (Spinal Muscular Atrophy) Mechanicsville will be held from 7 to 11:30 p.m. Friday, April 8, at Plant Zero at Zero E. 4th St. in Richmond.

Each person is asked to raise a suggested $100 to help continue the fight against Spinal Muscular Atrophy.

Party-goers will enjoy an evening filled with cuisine from White House Catering, beverages, dancing, a silent auction and raffle.

Entertainment is being provided and donated by Mechanicsville DJ, Bill “Everyday” Holliday.

Upscale casual attire is requested.

For more information, to make a donation and to RSVP by March 28, visit the website, www.fightsma.org, go to Events and Click on Party With A Purpose.

Party With A Purpose is supported 100 percent by donations from friends, family members, local corporate sponsors such as Cornerstone Therapy Associates, Edgemark Partners Inc., L&M CarpetOne, Qubica/AMF, Resource Realty Svcs., Richmond Eye Associates, and many other local businesses, restaurants and shops. All money supports the researchers’ quest to find a treatment and cure.

SMA (Spinal Muscular Atrophy)

Spinal Muscular Atrophy (SMA) is a deadly, genetic disease that causes a dramatic loss of strength and, in most cases, the ability to swallow and breathe.

Spinal Muscular Atrophy kills more babies than any other genetic disease and is the number one inherited killer of children under 2.

SMA occurs when a vital gene (called the “survivor motor neuron” gene or SMN) is deleted or missing, preventing the creation of a protein necessary for muscle strength.

The gene is carried by seven million potential parents, unknowingly.

While the mind remains unaffected, the muscles waste away. Most children with SMA are on the advanced level of learning.

In its most severe form, SMA robs children the ability to talk, walk, breathe, swallow or eat on their own. For many, the only movement they have is their eyes or a finger. All kids living with SMA face tremendous battles every day no matter what “form” they have.

Colds and flu can be deadly for kids with SMA and most lose their battle against SMA due to what begins as a “little cold.”

Currently, there is no effective treatment or cure for SMA and it continues to take the lives of children all too frequently.

The good news, researchers are moving quickly toward a treatment that will give these kids the extra time needed to achieve the ultimate goal: a cure.

Andrew Creighton

Andrew has been fighting SMA since he was born. Continuing to beat the prognosis that he wouldn’t live past the age of 8, he celebrated his 18th birthday in September.
Andrew has used a power wheelchair since the age of 2½ and requires assistance with all aspects of everyday living.

Despite Andrew’s physical limitations, he has continued to maintain an awesome outlook on life, a “can-do” attitude and a will and a spirit for life that most “healthy” people will never achieve.

Due to lengthy illnesses, he is finishing up his senior year at home with daily tutoring and will graduate from Hanover High School in June.

He loves history, German and politics and loves a good debate.

Andrew enjoys graphic arts on his Mac and even has a small online graphic arts business. He is the artist behind the great event t-shirts that are given to all who attend our events.

Andrew loves to vacation at Smith Mountain Lake and likes to fish as much as he can while there.

He also loves going to Disney World and the parks there. His favorite is Epcot, where he likes to eat his way through the different countries.

He has attended Cool Spring Church since the age of 3 and is a leader and active participant in the student ministry there. His faith is the most important thing to him.

Andrew has a heart for missions and has had the opportunity to do some great things.

He was part of a mission team that hosted a camp for Navajo Indian children in Flagstaff, Ariz.; he participates each spring in a 30-Hour of Famine that raises money for world hunger; he has travelled to Washington, D.C., and downtown Richmond to hand out backpacks to the homeless community, filled with food, clothing and Bibles; he has been a group leader in Vacation Bible School for the last seven years and has designed a number of their VBS t-shirts; he has been a coach for Upward Flag Football and assisted his uncle in coaching his cousins Upward Basketball Team as well.

Another of Andrew’s loves is cooking, more specifically, all things “BBQ” and all things cooked on a smoker. He loves to come up with rubs and marinades for meat and is in charge of the preparation of the Thanksgiving turkey each year.

Cooking utensils and gadgets are regularly found among his Christmas and birthday presents.

His mother, Carice Smith, said “Andrew has a dedicated and great group of friends and family members that support and encourage him (and us) daily … although I think he is the encouragement and inspiration to us.”

“He continually has a smile on his face and a cheerful disposition that never falters even when things get rough,” he added. “And they do, a common cold can easily last a month for him, a common cold can be life-threatening and it’s like nothing you or I experience when sick. A few years ago before facing major surgery, he told his grandmother that if something happened to him he wasn’t worried, ‘I know where I’m going, why would I be scared. Amazing. isn’t he?”

His mother also said Andrew “really is a true fighter that never really stops fighting ... and neither will we. It has been amazing the last 13 years to experience the support, awareness and attention that has been brought to SMA, but until a cure is found and no parent has to count their child’s life in months we will fight on!

FightSMA Mechanicsville

“Our family wanted to do something more for a disease that had no cure or treatments available,” Carice said. “SMA is a little-known killer that does not get much federal funding or the awareness it needs. The task has been left to the families and friends of these amazing, inspirational fighters to get the awareness and funding so desperately needed.”

In 1998, Andrew’s family, along with a team of dedicated volunteers (including family, friends and even some of his teachers), began supporting the organization, FightSMA (www.fightsma.org) and coordinating events for the Mechanicsville chapter, furthering the mission, “To strategically accelerate the search for a treatment and cure for Spinal Muscular Atrophy.”

FightSMA was started in 1991 by Joe and Martha Slay, parents of another Andrew fighting SMA. It is headquartered in Richmond. In 20 years, it has increased to 17 chapters across the country and one in Canada.

Andrew’s first fundraiser, the “Help Andrew Strike-Out SMA Bowl-A-Thon” was such a huge success that they continued it for eight more years and raised more than $350,000, collectively.

Carice said, “It was supported and embraced whole-heartedly by the staff, students and their families at Rural Point Elementary and Oak Knoll Middle and the community at large. It became a highlight of the year for many living in Mechanicsville and embodied the true meaning of ‘school and community spirit’ with many pitching in to make it the huge success that it was.”

As part of FightSMA’s efforts at gaining awareness and research dollars for SMA and along with families from all across the country, Andrew and his family travel to Washington, D.C., each spring to lobby for the passing of the first-ever SMA Treatment Acceleration Act introduced into Congress in 2007 by co-sponsor U.S. Rep. Eric Cantor, R-7.

Andrew has met Congressman Cantor, former U.S. Senators George Allen and John Warner, as well as former U.S. Rep. Patrick Kennedy. He also has met with health-care staff members of U.S. Sen. Jim Webb.

While the bill has not yet passed, it has dramatically increased awareness of SMA among lawmakers and is directly responsible for the increasing attention SMA is receiving from the National Institutes of Health (NIH).

“The bill has had a tremendously positive impact to date,” Carice said. “Our efforts have secured 118 co-sponsors in the House and 21 co-sponsors in the Senate and is responsible for the opportunities that are emerging to engage the NIH even more deeply in the effort to find a treatment for this disease.”

Progress as a result of FightSMA’s efforts include: Funding researchers at academic institutions and biotech corporations in the United States, the United Kingdom, France, Italy and Canada. Attention has been brought to the disease through national and local media outlets.

SMA research serves as a foundation to help advance research for about 20 other diseases, including Alzheimer’s, Parkinson’s, ALS (Lou Gehrig’s) and Muscular Dystrophy.

Significant strides have been made in the care of children living with SMA with the publication of the “Standard of Care for SMA,” enabling all parents the tools and resources they need to properly care for their children.

In anticipation of a viable treatment, doctors are pushing for newborn screening for SMA to become routine.

FightSMA also supports the “FighterMom” program, which is designed for any parent facing the challenges of raising a child with a chronic or life-threatening illness by equipping them with the tools and resources they need to effectively fundraise, lobby for federal dollars, advertise and a host of other helpful hints and is an invaluable tool and free guide to everyone.

“Thanks to the many dedicated and committed friends, family members and the Mechanicsville and surrounding communities, FightSMA Mechanicsville is truly making a difference in the lives of these valiant fighters and will not stop until Spinal Muscular Atrophy is a disease of the past,” Carice said.