Penny War Fundraiser for Rare Diseases
Join the Belnap Family in the Penny War for Rare Diseases!
Blue Ridge School in Pinetop-Lakeside, Ariz. will be participating in a Penny War fundraiser the week of April 28th – May 2nd. The purpose of the fundraiser is to raise money for children with rare diseases. The fundraising will include a penny war, dodge-ball events, hat and iPod day, and other activities.
Each classroom will be given a container they decorate and put in the library. The goal is to have the most points, or pennies, in your container at the end of the week. At the end of each day, the money will be counted so each class knows where they stand. The classroom with the most points at the end of the week will have a pizza party along other prizes.
The Penny War is a fundraiser through the Belnap Foundation, a local foundation that is dedicated to supporting research and raising awareness of mitochondrial and other rare diseases.
Proceeds from this fundraiser will be donated to TGen’s Center for Rare Childhood Disorders in Phoenix, Ariz. and the Foundation for Mitochondrial Medicine located in Atlanta, Ga. These organizations are dedicated to diagnosing and finding treatments for patients with rare diseases.
You can participate online by making a donation to The Belnap Family Fund. When making an online donation, write “Penny Wars” in the comment box.
Visit the Foundation for Mitochondrial Medicine to learn more about mitochondrial diseases and how you can help save lives.
Savi Provisions hosts Partners for the Cures Wine Tasting to Benefit FMM
Big thanks to our newest Partners for the Cures partner, Savi Provisions for co-hosting a special wine tasting to benefit FMM last Thursday evening. An enthusiastic crowd of more than 30 guests sampled specially selected wines and enjoyed delicious hors d’oeuvres. Savi’s Anthony Alvarez educated guests with tasting notes, and Savi generously donated a portion of the proceeds from the evening’s ticket sales as well as wine purchases to FMM.
If your organization is looking for a way to “give back” while at the same time boosting visibility and sales for your business, please consider the Foundation for Mitochondrial Medicine’s Partners for the Cures: Shop, Dine and Play for Mitochondrial Disease program. In addition to supporting our vibrant and growing foundation’s mission to fund the cures and raise awareness for mitochondrial disease, your organization will greatly benefit from this partnership. FMM wants to recognize and promote our Partners for the Cures by offering the following benefits and more. Learn more about becoming a partner.
Austin Childers Dies after Long Battle with Mitochondrial Disease
Austin Childers, whose battle with mitochondrial disease inspired thousands, passed away on Wednesday, February 26. Twenty-three year old Childers spent most of his days in medical facilities and through it all, maintained a positive outlook even in the midst of his overwhelmingly difficult situation. Throughout his 12-year battle, Childers underwent more than 70 surgeries and countless other medical procedures.
“Austin’s love for people was so deep,” his mother, Ashley Childers, said. “He just wanted people around him.”
His father, Chris Childers, spoke of the medical hardships his son endured.
“Through it all, he had this disposition about him that he could just overcome,” he said.“He never quit and he never gave up and he was always smiling.”
When visitors went to see him, Chris Childers said his son “would always turn it around and say, ‘Tell me what’s going on in your life.’ It was always about others. And it was always about putting someone before himself and never, ever complaining. … He was just born that way to have this internal optimistic view of life.”
Among those who visited him in the hospital were Alana “Honey Boo Boo” Thompson and her family. Actor Aaron Paul stopped by while filming the movie “Need for Speed” in downtown Macon. Comedian Durwood “Mr. Doubletalk” Fincher had also been a frequent visitor and had become a special friend of the family.
Few have known adversity like Austin, who was diagnosed with mitochondrial disease when he was playing football at First Presbyterian Day School (Macon, GA) in the seventh grade.
In late August, FPD dedicated the football field to Childers, who never played forthe Vikings past the seventh grade due to his condition, yet served as team captain and attended every game when he was able.
Greg Moore, FPD’s athletics director, on spoke of the football field that now bears Childers’ name and what his courage and determination might mean to future students and athletes.
“Austin, for all who know him and his family, is a picture of faith and perseverance,” Moore said. “Our hope is that for generations the story of how he handled what looked like all of life’s toughest circumstances will be something to be praised and cherished.”
Moore added, “There’s a lot of lessons there that go way beyond an athletic field. But certainly, athletic teams, for a long time, should be taught that there is a way to handle adversity, and do so in a way that has a positive impact on everyone around you. And that’s the story of Austin Childers.”
Austin’s remains will be donated to aid in research for the disease.
One in 2,500 are affected by mitochondrial disease. It’s a complex, under diagnosed disease that may appear at anytime – at birth, in the teen years or as an adult. To learn more about mitochondrial disease, please visit hopeflies.org.
Please note: FMM reached out to Chris Childers approximately three days before Austin’s death. The above article is from the Macon Telegraph and photos are from Prayers for Austin Childers, Austin’s Facebook support group.
Phyllis Monington’s Struggle with Mitochondrial Disease
Phyllis’ legs were badly affected and her symptoms began with trouble balancing. She went from using a walking stick, to crutches, then a walking frame, and now a wheelchair.
Since her late father and elder sisters were diagnosed with Multiple Sclerosis, it was assumed she had it too.
Many years ago, Phyllis saw a neurologist but the doctor, who is no longer practicing medicine, just passed her off and said there was nothing wrong with her.
It was only in the last five years that she decided to pursue surgery for her eyelids to be lifted. Her eyelids were drooping so much that her eyes were nearly closed. She also has glaucoma and recently found out recently that her corneas have deteriorated. Her surgeon then realized that the muscles around her eyes were not working and she was referred to a neurologist.
The neurologist ran multiple blood tests and muscle biopsies and confirmed she has mitochondrial disease. Phyllis’ neurologist also said it was more than likely her father and two sisters also had it as well.
Doctors have told Phyllis and her family that there is nothing else they can do for her. Dr. Bolt, of Dewi Sant Hospital, has experience with mitochondrial disease and visits her every few months to try to keep her comfortable.
Doctors have told her that this was genetic, but so far Phyllis’ disease had stopped at her at the moment, as her son and daughter have passed the point where their mother and other relatives developed the disease.
She is under the care of Dr. Gail Davies and she has been attending the Royal Glamorgan Hospital where she received her diagnosis from Mr. Pickersgill, the Head Consultant Neurologist.
Today, Phyllis’ quality of life is non-existent. She lives in a small town known as Pontypridd, Rhondda cynon Taff, in South Wales, where her husband and her daughter, Karen, care for her. Karen follows the Foundation for Mitochondrial Medicine on Facebook, where she shared her mother’s story.
Visit the Foundation for Mitochondrial Medicine to learn more about mitochondrial diseases, fundraising opportunities, and how you can help save lives.
Lisa Chatigny runs New Orleans Marathon
This past Sunday, Lisa Chatigny ran the New Orleans Rock ‘n Roll marathon as a Hope Flies Athlete, all in the name of a close friend impacted by mitochondrial disease.
This was her second full marathon, but this time it wasn’t all about Lisa and her performance.
In the past, Lisa trained for the Nashville marathon and set an aggressive goal. But when Lisa crossed the finish line an hour after her anticipated time, she was heartbroken. Lisa then decided that she didn’t want to set a time goal for the New Orleans marathon, but set a fundraising goal. Lisa told herself that even if she fell short on race day, she knows that she would achieve her fundraising goal.
This time, it meant so much to Lisa knowing, from the beginning, that it was not all about herself and her performance. As a Hope Flies Athlete, Lisa raised over $1,400.
“The fundraising for the Foundation for Mitochondrial Medicine went so well, and I’m so fortunate to have such generous and supportive friends and family,” Lisa said.
Lisa and her husband traveled with three other couples who all ran the marathon and half-marathon. The morning of the race was drizzly and warm. The course provided a change of scenery, including a stint through a very foggy French Quarter. Since it was a rock n’ roll-themed marathon, the runners were treated to all kinds of music from bagpipes to gospel choirs.
The second half of the course was harder for Lisa, since there were few spectators to lend support and there were some “hills” as they crossed canals. Although Lisa did not have a specific time goal in mind, she did want a time with a “4” in the front. Lisa’s legs started to give out by mile 18; she dragged on as best she could. But Lisa’s husband, who finished the half marathon just a few hours before, came and got Lisa at mile 24, and ran with her until just before the finish. Her finish time was 4:58:42. Lisa couldn’t have asked for a better marathon experience!
The Foundation for Mitochondrial Medicine’s Hope Flies Athlete program allows individuals to participate in any athletic endeavor. It is a fantastic way to raise money for mitochondrial research in honor of someone you know who is suffering or a life that has been list to a mitochondrial disease. You can still support Lisa’s fundraising efforts and become a Hope Flies Athlete today!
The Quinn’s Atlanta Snowstorm Surprise
The Quinn’s story began with taking 17-year-old Lauren to Atlanta to see her specialist. Dr. Shoffner diagnosed Lauren Quinn with having mitochondrial disease five years ago.
This past week, Lauren and her mother packed their bags and flew from Florida to Atlanta. Little did they know, they were in for more than just a doctor’s appointment.
Lauren had a 1 p.m. appointment with Dr. Shoffner on Tuesday, January 26. After the appointment, Lauren and her mother, Barb, left with the intent to return their rental car prior to their flight back to Florida.
Once they left Dr. Shoffner’s office and pulled onto the highway, everything became so real. Dr. Shoffner had informed them of the weather, but nobody had any idea that it was moving so fast.
Traffic was gridlocked. The Quinn’s rental car’s engine stopped twice, occasionally swerving as a result of the black ice. They kept turning the car off to preserve gasoline.
A few hours later, Lauren’s silly side came out and she had an urge to make a snow angel on the side of the highway. After all, they were not going anywhere! Lauren and Barb made the most of it, chatting about Lauren’s upcoming Winter Formal. They both knew they didn’t have much choice, so it was easy to make the best of it, since so many people around them had it much worse. There were accidents, abandoned cars, and even a mother giving birth on the side of the road. Barb then thought of all the people that lived through Hurricane Andrew in Miami and September 11, which reminded them that they didn’t have anything to complain about!
After countless hours of sitting in gridlocked traffic, Barb was finally able to inch her way off an exit. Their goal was safety and food. They tried to get gas, but each station had a long line of cars. Barb then spotted a glowing “OPEN” sign. In hopes of getting dinner, they pulled in only to find out it was a bar. But a bar with food sounded great. So 17-year-old Lauren went to her first bar at 1:30 a.m. with her mother.
After dinner (or a very early breakfast), Lauren and Barb sought safety at an Atlanta shelter. It was life changing. They were immediately overcome with emotions the moment they stepped foot in the shelter. What a dose of reality.
The Quinn’s slept in a well-lit, large, gymnasium on mats. Their flight had already been cancelled three times and they were eager to go ahead and get to the airport, so Lauren and Barb didn’t sleep much that night.
The roads were still a disaster when they left for the airport. Since their rental car was unpredictable, “conservative Barb” decided to take her chances and ask a fireman to take them to a MARTA station a mile and a half away. MARTA’s website only provided transportation information for a typical day, which this was not! So, Lauren and Barb took off in a large SUV, which gave them a pleasant feeling of safety under the inclement conditions.
Lauren and her mother stood outside in the 18-degree weather in their warmest Florida attire, hoping to catch the first (but delayed) MARTA train to the airport. Once MARTA arrived, they managed to make it two stops, but then they were required to get off and wait outside again for the next train, which was to arrive 90 minutes later. Yes, these Florida girls stood outside and nearly froze for an hour and a half.
But, luckily the train arrived earlier than expected and Hartsfield-Jackson International Airport never looked so good! After four flight delays, they were finally in the air, heading back to Jacksonville. Lauren and Barb have always loved their beds, but “love” took on a whole new meaning.
The Quinn girls are so thankful for the Red Cross. They were so wonderful at the shelter, displaying patience, kindness, concern and constant assistance. Everyone worked hard and the Quinn family has the greatest amount of respect for all that they do – and it was done with such grace and willingness.
Lauren and Barb Quinn are both involved in this year’s Hope Flies for Friends event taking place on Thursday, February 20th at Table 1 in Ponte Vedra Beach. Click here to learn more about the event, mitochondrial disease and help us fund the cures.
Three Jacksonville Families Partner with the Foundation for Mitochondrial Medicine – Hope Flies for Friends
Three Jacksonville families are partnering to host a benefit for the Foundation for Mitochondrial Medicine and the Hope Flies for Friends fundraising event. Hope Flies for Friends is inspired by three Jacksonville youth that have mitochondrial disease — Lauren Quinn, Stacy Young and Caroline Sacco – honorary chairs of the event.. The event is scheduled for Thursday, February 20, 2014 at 5:30 pm at Table 1 in Ponte Vedra Beach and will feature wine tastings paired with items from the Table 1 menu. Organizers hope the event will raise $13,000 for the Foundation.
Mitochondrial disease is an energy production problem that primarily affects the muscular and neurological systems. Mitochondrial are the “power plants” that produce the body’s essential energy and when they don’t function properly, the body can have a “power failure.” There is a graduation of affects – ranging anywhere from a “brown out” to a fatal “black out” – and no two people diagnosed with mitochondrial disease have the exact same symptoms. Mitochondrial dysfunction is at the crux of many common diseases including Autism, Alzheimer’s, Parkinson’s, ALS, and chronic fatigue, and research and treatments for mitochondrial disease could help in treatments for these other diseases. Mitochondrial disease affects 1 in 2,500 and currently there are no treatments available.
Lauren Quinn, a high school junior, was diagnosed in 2011. Although Lauren has had a lifelong passion for sports, her mitochondrial disease means she no longer has the energy to play sports. Completing a full week of school, along with the rigors of being a junior in high school and minimal social activities, often times leave Lauren extremely fatigued with muscle weakness and the inability to concentrate. She usually spends her weekends resting and giving her mitochondria time to recover for the next week. More recently, she has developed significant memory issues that has created additional challenges.
Stacy Young is a freshman at University of Central Florida, majoring in biomedical sciences with the goal of becoming a pediatrician. Stacy became ill at age 11 and received an incorrect diagnosis of mononucleosis. After struggling to find an answer to her medical issues, she was finally diagnosed with mitochondrial disease at age 15. Her symptoms continue to progress and change frequently, sometimes on a daily basis. The unpredictability of her symptoms is extremely challenging to cope with and she struggles with fatigue, GI issues, chronic pain, muscle weakness, neuropathy, memory issues and more. Often, she is unable to perform daily tasks such as eating, attending school, driving, or walking. Stacy enjoys dancing, cooking and spending time with her friends and family.
Caroline Sacco is nine years old and has experienced health issues from birth. She was born in respiratory arrest and she failed to meet early developmental milestones. By the age of three months, Caroline was undergoing intensive early interaction therapy. Throughout her early childhood, multiple doctors were not able to determine the cause of her health issues and she was not diagnosed with mitochondrial disease until age 6. Her mitochondrial disease affects many of her body’s systems including her respiratory, muscular, bone, digestion and immune systems among others. She is a happy child and loves her school and classmates.
“The families hosting Hope Flies for Friends have a true passion to educate others about mitochondrial disease and the importance of finding a cure. Their efforts translate into significant funds raised,” said Laura Stanley, executive director for the Foundation for Mitochondrial Medicine. “Hope Flies for Friends is a fun way to get involved, support local Jacksonville families and help fund a cure for mitochondrial disease.”
Tickets to the Hope Flies for Friends are $25 per person and sponsorships are available. Event Chairs are Lisha Wise and Phyllis Bove and the event committee includes Barbara Quinn, Carol Young, and Amanda Sacco. For more information about Hope Flies for Friends, visit www.hopeflies.org/friends or visit the Facebook page at www.facebook.com/hopefliesforfriends.
The Foundation for Mitochondrial Medicine Joins the National #GivingTuesday Movement to Fund the Cures!
The Foundation for Mitochondrial Medicine is participating in #GivingTuesday to help raise awareness about Mitochondrial Disease and other related diseases. All funds raised on #GivingTuesday will go towards the Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM)’s partnership to drive innovative translational research for mitochondrial dysfunction. To learn more about this partnership, click here.
The Foundation for Mitochondrial Medicine has joined #GivingTuesday, a first of its kind effort that will harness the collective power of a unique blend of partners—charities, families, businesses and individuals— to transform how people think about, talk about and participate in the giving season. Coinciding with the Thanksgiving Holiday and the kickoff of the holiday shopping season, #GivingTuesday will inspire people to take collaborative action to improve their local communities, give back in better, smarter ways to the charities and causes they support and help create a better world. Taking place December 3,2013–the Tuesday after Thanksgiving–#GivingTuesday will harness the power of social media to create a national moment around the holidays dedicated to giving, similar to how Black Friday and Cyber Monday have become days that are,today,synonymous with holiday shopping.
To support FMM and #GivingTuesday, please donate on Tuesday, December 3, 2013!
Spicing Up Mitochondrial Research
Tampa Bay Yacht Club’s Executive Chef, Jean-Christophe Setin, founded the Provencal Rub spice blend in 2005 when his twelve-year-old son Sebastien was diagnosed with Mitochondrial disease. Jean-Christophe and his wife Sandra wanted to give Sebastien every chance to see progress in this particular area of research and hopefully a cure.
Chef Jean-Christophe’s all-purpose seasoning consists of 17 individual spices from his native Provence, France. The seasoning is all-natural and contains no MSG. A portion of proceeds from the sales of the Provencal Rub spice blend are donated to the Foundation for Mitochondrial Medicine to help find new treatments and save the lives of hundreds of individuals, including Sebastien’s.
The Provencal Rub spice blend is available here and at Tampa-area Fresh Market stores.
Visit Hope Flies Sebastien’s Smiles to learn more about Sebastein’s story, virtual fundraising opportunities, and how you can help save lives.
Katie Parsons, a 6th Grader Working to Fund the Cures for Mitochondrial Disease!
Meet Katie Parsons, an engaging 11-year-old girl from Marietta, Ga. Katie is an outgoing, happy 6th-grader that loves riding and jumping horses. She has also recently started as a percussionist. Katie is also very excited to earn her babysitter and CPR certificate because she loves taking care of others, especially little kids. In many regards, Katie is just like her classmates, except that she has mitochondrial disease.
Katie was born healthy at 7 pounds 11 ounces. Her health was fine her first few weeks, but then she started having issues with reflux. At 6 weeks, she saw her first specialist – a gastroenterologist. As the reflux worsened she began to not eat and she developed torticollis and plagiocephaly. Even at this early age, she knew that eating caused her pain, so she had to have an NG tube to help her from losing further weight. This was just the beginning of many ER visits and hospitalizations.
It was not until an ER visit where her blood sugar was in the 30s that Katie’s parents began to get the feeling that something was very wrong. Katie began crying from excruciating pains in her legs and began falling. The family began a journey with specialists included endocrinologists, geneticists, allergists and nutritionists. Katie was hospitalized many times due to illness, blood sugar fluctuations and respiratory issues. Her parents were scared and felt helpless knowing something was wrong, yet they still had not received a concrete diagnosis.
Katie’s parents took her to Dr. John Sladky, a neurologist who conducted an EMG and confirmed Katie’s myopathy. Dr. Sladky was the first specialist to mention mitochondrial disease. From that appointment, Katie went to Dr. John Shoffner, a leading mitochondrial expert and researcher. A muscle biopsy with Dr. Shoffner confirmed Katie’s mitochondrial disease, Complex 1 and 3. After starting a regimen of medications, her symptoms started to improve.
Through the next several years, Katie’s condition has constantly evolved through highs and lows. Additional medications help make dramatic improvements, and then other health issues develop, such as cerebral folate deficiency, asthma, lactic acidosis and migraines. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing can be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to run.
Katie is now a young philanthropist and raises funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 sno cones for FMM!
This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Atlanta Braves game and represented the Foundation for Mitochondrial Medicine at the Foundation’s first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren.
Earlier this fall, Katie was recognized 11 Alive’s Random Acts of Kindness and honored as FMM’s first Firefly Friend.
Katie is a shining example that one person can make a difference, no matter their age. The Foundation can’t wait to see what the future holds for this creative and enthusiastic girl!