We are Thankful for All of You!
Individuals who are involved with the Foundation for Mitochondrial Medicine (FMM) are often asked “Why.” Why do you give? Why are you involved? Why is it so important? As we all get ready for Thanksgiving, FMM would like to say THANK YOU to all of our team members, partners, committee members and volunteers. We are thankful for each and every one of you and your passion to help us raise awareness, fuel the connections and fund the cures for mitochondrial disease!
Learn more about people involved with FMM!
Danielle Poppens and her husband, Jim, learned about FMM from a friend who invited them to the inaugural Hope Flies Catch the Cure event in 2010. Danielle was interested in attending, and donating, because she has a son with autism and was aware of the relationship between autism and mitochondrial dysfunction. Read more…
Laura and David Green
In some ways, Ellie is like a typical kid–she has an easy and infectious giggle, she loves to splash in the pool, wrestle with her 14-year-old sister and watch The Sound of Music. However, this devastating disorder affects every part of her life and body. Unlike many children with mitochondrial disease, Ellie does walk, but a better description would be that she teeters, stumbles and careens. Ellie is nonverbal–she has a few signs and gestures and is very excited about her communication program on the iPad. Still, many days, even these gestures and words are hard for her to express. A child in Ellie’s class once said it best: “Ellie’s body doesn’t always do what she tells it to do.” Read more…
My wife, Jonna, gave birth to Audrey in August of 2007. Older sister Claire was born 2 years before so we could tell that something was different. Audrey had difficulties with feeding due to reflux which led to weight loss and an overall failure to thrive. We consulted with several medical professionals throughout the course of the following 3 years before Audrey was diagnosed with mitochondrial disease by Dr. John Shoffner at Medical Neurogenetics. Read more…
My name is Audrey and I am 4 years old. I have mitochondrial disease. When I was three days old, I quit breathing and spent a lot of time in the ICU. I have low muscle tone, difficulty swallowing, heat intolerance and cerebral spinal folate deficiencies. I live in Indiana, just south of Indianapolis. My parents took me to Atlanta, Georgia when I was almost 2 years old and I got my muscle biopsy confirming my diagnosis. I take many medicines every day, but do not let Mitochondrial Disease stop me! Read more…
As I watched my 14-year-old son, Remi, run a 5K in the fall of 2011, I thought to myself, “Isn’t it incredible – I had a daughter who had no energy, and I have a son with an overabundance of energy.” It was at that race that I came up with the idea of having a 5K to help raise awareness of, and funds to find a cure for, mitochondrial disease. Read more…
Newell Belnap is the father of 4 wonderful children. They have fun together and work hard. One of the family’s mottos is ”The Belnaps can do hard things”. He has big plans for his children and want them to be happy. Read more…
Five year old Abby Sauerhoefer attends Kindergarten at Broad Brook Elementary. Abby has struggled with breathing and feeding issues from birth. By two months, we knew something was terribly wrong when she started having frequent, uncontrolled movements of her arms and legs. We learned that these episodes were infantile spasms or seizures. Extensive testing and treatments led to a diagnosis in July 2009 of a mitochondrial disorder. Along with daily seizures, this disorder does not allow her to walk, speak, or sit up, and her only means of nourishment is through a feeding tube. Seizures are managed, but not completely eliminated, with medication and diet. Although Abby is not able to talk, she expresses her emotions through “Abby songs”. She loves music and enjoys the company of other children. She moves around by rolling or using a stroller. We are hopeful that the foundation will find new treatments to help Abby and appreciate your support in finding a cure! Read more…
Hope Flies Event Raises More than $210,000 for Mitochondrial Disease Research
The Foundation for Mitochondrial Medicine held its fourth annual fundraiser, Hope Flies Catch the Cure, on September 20 at the Mason Murer Art Gallery. Guests enjoyed the event, including dancing to retro ‘70s music from Yacht Rock Revue; a live auction with vacation packages and sports trips; a silent auction with art, shopping spree from Saks Fifth Avenue, Judith Ripka jewelry, sports memorabilia and travel; a raffle with a home lighting package from The Outdoor Lights; a special firefly lounge sponsored by Hublot luxury watches; delicious food from Endive catering and open bars provided by Georgia Crown distributors.
Event chairs were Danielle and Jim Poppens, and honorary party chairs were Laura and David Green. According to Laura Stanley, executive director of the Foundation for Mitochondrial Medicine, the event raised approximately $210,000 and welcomed many new supporters among the 500 ticket purchasers to the event. All proceeds benefit the foundation and its mission to fund research for mitochondrial disease treatments.
“The Foundation has supported treatment-oriented research studies like drug compound testing led by the Netherlands’ research team at Khondrion and brain studies on cognitive fatigue at Georgia Tech and Georgia State Universities, ” said Dr. John Shoffner, founding board member of The Foundation for Mitochondrial Medicine. “Our grants are also allowing new drug compounds to be tested, eventually leading to full clinical drugs trials. We are particularly excited about the promise of our new co-funded research project with the Alzheimer’s Drug Discovery Foundation. Even though one cure and one timeline don’t exist right now, support through fundraisers like Hope Flies Catch the Cure will allow researchers to move forward faster.
“The complex mitochondrial disorders that impair the body’s ability to adequately produce energy are also at the root of Parkinson’s disease, Autism, Alzheimer’s, chronic fatigue syndrome, as well as many types of childhood developmental delays,” continued Shoffner.
According to 2013 Hope Flies Catch the Cure co-chairperson Danielle Poppens, “1 in 2,500 people are affected with mitochondrial disease, and that number increases dramatically if you include other related diseases. Mitochondrial disease is difficult to diagnose and no patient, doctor or researcher can beat the disease alone. It will take dedication of many to help the children and adults with mitochondrial disease. We are delighted to have hosted another successful fundraising event.” The Poppens became involved because of their connection with their son’s Autism.
The Hope Flies Catch the Cure event is the Foundation’s annual event in Atlanta. Other Hope Flies Signature events around the country also help raise funds and awareness for the Foundation of Mitochondrial Medicine. If you are interested in launching a regional Hope Flies event, or hosting a fundraiser in your city, contact the Foundation at email@example.com For more information on the Foundation, please visit www.mitochondrialdiseases.org.