Fly Out 2010 Slideshow

Photos of MDA families, sponsors and advocates who met with policymakers to share stories and gather support in August & September 2010

Rep. Dean Heller, right, with Nevada constituents Cameron and Ashley Goeppert and their infant son Charleston, who has spinal muscular atrophy.
by Quest Staff on October 4, 2010 - 5:26pm

This year's Fly Out was a resounding success, with dozens of MDA families, sponsors and advocates meeting with members of Congress and their staffs in states and districts from coast to coast (and even in Hawaii).

In all of these meetings, which took place in the home districts of more than 30 U.S. senators and representatives throughout August and September, families shared their stories and asked for support for legislation important to the neuromuscular community.

Below the video are captions for the Fly Out slideshow photos, listed in alphabetical order by state. (Note: More Fly Out meetings took place than are represented in this slideshow, because not all visits were photographed. In a few cases, MDA was unable to obtain permission to reproduce a photograph from a visit.)

For more information, including a complete list of all Fly Out visits in August and September, please see the Quest article Fly Out 2010 Takes Off.


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Slideshow Photo IDs
Front: Jerry Farris (MDA Personal Achievement Award recipient; spinal muscular atrophy). Back, from left: Gary Wood (vice president of retail banking, RBC Bank), Blair Agricola (Sen. Richard Shelby’s district representative) and Mike White (Jerry’s uncle and assistant). From left: Kelley Walker, Barbara Marlar, Rep. Mike Ross, Ken Fisher (who has myasthenia gravis), Faith Clements (MDA executive committee member), Sandra Fisher (Ken’s wife), Dominic Flis (Flis Enterprises-Burger King/Shamrock sponsor), Sheridan, Ark., Mayor Joe Wise and Justin Wise (MDA staff).
Front: Courtney Mazzella (age 13, spinal muscular atrophy). Back, from left: Len Mazzella (Courtney’s father), Bill Strong (father of Gwendolyn, age 2, SMA), Stephanie Mazzella (Courtney’s mother), Dean Mead (Albertsons store director and member of MDA executive committee) and Sharon Siegel (Rep. Lois Capps’ district director). Front, from left: Carissa Decelles (age 19, spinal muscular atrophy), service dog Charlie and Vyoma Raman (age 8, SMA). Back, from left: Elaine Werner (Sen. Lieberman’s community liaison), Sethu Sankaranarayanan (Vyoma’s father), Kathy Bass (Sen. Lieberman’s staff), Casey Bilodeau (MDA staff), Brianna Janiak (Carissa’s sister) and Johnna Janiak (Carissa’s mother).
From left: Dr. Charles Whitaker (co-director of MDA Clinic at the Hospital for Special Care in New Britain), Tod VanKirk (MDA staff), Casey Bilodeau (MDA staff), Therese Nadeau (who has spinal muscular atrophy), Rep. Chris Murphy, Armand Legault (who has spinal muscular atrophy) and Sarah Hayden (MDA divisional director for health care services). From left: Nicole Cheslock (Eden’s mother), Pierce Cheslock (Eden’s brother), Eden Cheslock (age 2, spinal muscular atrophy), John Cheslock (Eden’s father), Sen. Tom Carper, Olivia Baldi (Dr. Scavina’s daughter) and Dr. Mena Scavina (co-director of the MDA Clinic at the Alfred I. duPont Hospital for Children).
Front: Erin Murakami (age 6, spinal muscular atrophy). Back: Jennifer Murakami (Erin’s mother) and Jennifer Beppu (Rep. Mazie Hirono’s deputy legislative director). Front: Amelia Evans (who has spinal muscular atrophy); Back from left: Angie Hills (MDA staff), Rep. Lynn Jenkins and Nancy Inwood (MDA staff).
Front: Jacob Meyer (age 10, mitochondrial myopathy). Back, from left: Christy Meyer (Jacob’s mother), Rep. Ben Chandler, Ainsley Harris (MDA staff) and Ashley Mason (MDA staff) From left: Deborah Frandsen (Sen. Jon Tester’s field representative), Tracey Gianelli (MDA staff), Leanne Beers (Jess’ mother), Jess Beers (age 12, Dejerine-Sottas disease) and Tom Beers (Jess’ brother).
From left: Cameron Goeppert (Charleston’s father), Charleston Goeppert (age 8 months, spinal muscular atrophy), Ashley Goeppert (Charleston’s mother) and Rep. Dean Heller. Front row, from left: Jill Pantozzi (age 28, spinal muscular atrophy) and Laura Watson (age 20, spinal muscular atrophy). Middle row, from left: Gail Pantozzi, (Jill’s mother), Donna Watson (Laura’s mother) and Melissa White (MDA staff). Back row: Ralph Pantozzi (Jill’s father).
From left: John Rosso (father of Adelina Rosso, age 4, central core disease), Karina Cabrera (Sen. Gillibrand’s director of intergovernmental affairs) and Lucinda Rosso (Adelina’s mother). Front: Kevin Schaefer (age 17, spinal muscular atrophy) and service dog Pandy. Back, from left: Kristina Kelly (MDA staff), Rep. David Price and Cindy Schaefer (Kevin’s mother).
Front, from left: Brett Kingsley (age 4, spinal muscular atrophy), Elizabeth Thames (Sen. Sherrod Brown’s deputy state director), Andrew Schaffer (age 11, spinal muscular atrophy) and Cameron Thurman (age 12, Duchenne muscular dystrophy). Back, from left: Allison Kingsley (Brett’s mother), Michele Schaffer (Andrew’s mother) and Lori Thurman (Cameron’s mother). Rep. Mike Doyle with Ryan Ballou (age 23, Duchenne muscular dystrophy).
Sen. Jack Reed with Julia Ayoub (age 10, congenital muscular dystrophy). From left: Hannah Ostermayer (age 6, spinal muscular atrophy), Rick Ostermayer (Hannah’s father) and Matt Garcia (Rep. Pete Sessions’ outreach coordinator).
Regan Imhoff (age 5, spinal muscular atrophy) and Rebecca Young (Sen. Herb Kohl’s staff). Front, from left: Andy Sorter (MDA State Goodwill Ambassador, age 17, Friedreich’s ataxia) and Paula Sorter (Andy’s mother). Back, from left: Laurel Fischer (MDA staff) and Rep. Cynthia Lummis.
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