Over $100,000 Donated for SMA at Muscles for Mckenna Gala

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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Jim, Mckenna and Amy Ellixson

Jim, Mckenna and Amy Ellixson

The Annual Muscles for Mckenna Gala was held for the third year in Philadelphia, Pennsylvania and has raised $107,000 in donations to support the non-profit organization Cure SMA. It is still possible to donate to help the organization reach the $115,000 goal, as the funding will finance promising research projects working towards a cure for spinal muscular atrophy (SMA).

The fundraising event is held every year in honor of Mckenna Ellixson, the five-year-old daughter of the organizers Amy and Jim Ellixson, who suffers from SMA type III. Over the last three years in Philadelphia, the Annual Muscles for Mckenna Gala has already raised a total of $321,000. This year, in addition to the Ellixson family, the gala was hosted by the chairperson Kellie Keenan.

The evening was fired up by a dinner, dancing, silent and live auctions, an inspirational video interview with Jack and Al Freedman and live music by The Heartbeats. Its purpose was not only to raise funds and awareness to help families who suffer with the burden of the genetic and debilitating neuromuscular condition, but also to honor their obstacles and accomplishments along with those who have died due to the disease, for which there is currently no cure.

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SMA is the number one genetic cause of death among children younger than two years old. The disease causes malfunctions of the voluntary muscle movement, affecting the capacity to crawl, walk, control the head and neck and swallow. Cure SMA has been focused since 1984 on accelerating research projects that may change the lives of these families by providing financial support.

In addition, the organization is already organizing its Annual SMA Conference and inviting its members and other interested parties to join the event that will take place between June 18 and 21 in Kansas City, Missouri. The conference has been held since 1989 and it currently features the largest SMA-related research meeting in the country, for which investigators from all over the world and more than 105 presentations about the latest developments in SMA investigation are already confirmed, but also an educational component for patients and families.