Meet Payton, MDA’s 2016 State Goodwill Ambassador from Ohio

Payton Hometown: Cincinnati, Ohio Age: 13 Diagnosis: Congenital Muscular Dystrophy (CMD), a group of muscular dystrophies that become apparent at or near birth. CMD results in overall muscle weakness with possible joint stiffness or looseness. Favorite School Subject/Activities: Reading, writing, and art. Favorite People and/or Pets: I live with my older brother Jacob and my mom, Angela. I also . . .

Read More

Five Questions with CMD Researcher Liza Pon

Liza Pon, professor in the department of pathology and cell biology at Columbia University in New York was awarded an MDA research grant totaling $300,000 over three years to study the underlying mechanisms at work in CHKB congenital muscular dystrophy (CMD). Pon also will test whether therapies that promote function of a protein known as . . .

Read More

Alabama State Goodwill Ambassasdor

Lily Joy Bamberg, Age 11 Centreville, AL Home and Family Lily Joy Bamberg was adopted from Inner Mongolia, China at the age of 7. Lily lives with her parents, Trent and Kristie Bamberg, and has 3 siblings: Mary Ashtyn (16), Reece (13), and Ava (10). Diagnosis Approximately 3 months after her adoption, Lily was diagnosed . . .

Read More

CMD – Liza Pon, Ph.D.

Liza Pon, professor of pathology and cell biology at Columbia University in New York was awarded an MDA research grant totaling $300,000 over three years to study the underlying mechanisms at work in CHKB congenital muscular dystrophy (CMD). Pon also will test whether therapies that promote function of a protein known as the ryanodine receptor . . .

Read More

California State Goodwill Ambassador

Alexander (Zander) Vargas, Age 9 Sacramento, CA Home and Family Zander is the son of Jennifer and Antonio Vargas. Has one brother, Antonio. Diagnosis At age 6, Zander was diagnosed with Congenital Muscular Dystrophy (CMD), which at this time is grossly affecting his digestive system and bones, causing early onset osteoporosis. School Zander is currently . . .

Read More

Florida State Goodwill Ambassador

Manny Gore, Age 5 Brandon, FL Home and Family Manny lives with his parents, Beth and Daniel, and siblings, Jacob, Kaley, Sam, Luke and Zoe. Diagnosis Manny is diagnosed with Merosin Deficient Congenital Muscular Dystrophy. At least 30 different types of Congenital Muscular Dystrophy are now recognized. School Along with his brothers and sisters, Manny . . .

Read More

Hawaii State Goodwill Ambassador

Marjaneh Shaker, Age 11 Honolulu, HI Home and Family Marjaneh is the daughter of Morad and Marjan Shaker. She is a big sister to Alex and Anahita. Marjaneh is a local girl, born in Honolulu. Diagnosis Marjaneh has Congenital Muscular Dystrophy. CMD is a muscular dystrophy which usually becomes apparent at or near birth. In . . .

Read More

Tennessee State Goodwill Ambassador

Aiden Atkins, Age 10 Lebanon, TN Home and Family Aiden is the son of Alan and Michelle. Aiden is outgoing and loves to be the center of attention. He is very well-spoken and converses easily with all who have the opportunity to meet him. Diagnosis Aiden was diagnosed with Congenital Muscular Dystrophy (CMD) in 2008. . . .

Read More

Washington State Goodwill Ambassador

Marion Balderas, Age 13 Moses Lake, WA Home and Family Marion is a happy-go-lucky girl who lives with her mom, Kima, and dad, Izzy. She has two dogs- a poodle named Cloud and a cockapoo named Jager. Diagnosis Congenital Muscular Dystrophy (CMD) refers to a group of muscular dystrophies that become apparent at or near . . .

Read More