Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Celebrities Raising Awareness for Autism Funds and Research

The statistics are astonishing: Autism affects one out of every 68 children in the United States. Many celebrities have been affected by this developmental disorder and have done a lot to raise awareness and funds for research. From Sylvester Stallone to Tommy Hilfiger and Dan Marino, check out celebrities who are raising kids on the autism spectrum.

Sylvester Stallone

Sylvester Stallone

Sylvester Stallone’s youngest son, Seargeoh, was diagnosed at age 3.

“To have a child in this predicament is extremely sad,” he told People shortly after his son was diagnosed in 1985. “It’s almost like a radio station — he fades on and off of the signal.”

Sylvester’s son Seargeoh Stallone has autism and is currently 33. Sly has done much work over the years to raise awareness including a PSA in 1990.

Dan Marino

Dan Marino

Former Miami Dolphins quarterback Dan Marino’s son, Michael, was diagnosed with autism at the age of 2. Dan and his wife became concerned when they noticed developmental delays in their son. The couple has gone on to build the Dan Marino Center at the Miami Children’s Hospital to help those with developmental and psychological disorders.

Michael is now 21 years old and, after receiving intensive therapy at an early age, is now reportedly living a wonderful, productive life.

Holly Robinson Peete

Holly Robinson PeeteHolly’s son Rodney Peete has autism, and she was the keynote speaker at the Foundation for Mitochondrial Medicine’s Hope Flies Health Series in 2012. She has been an outspoken advocate for autism research and understanding for years.

John Travolta

john travolta

John Travolta and Kelly Preston’s son, Jett, had autism before passing away at the age of 16 after having a seizure. The couple did not talk about their son’s condition until he was testifying to a grand jury after the death of his son and revealed his son was indeed autistic.

Preston said her son was “the most wonderful son that two parents could ever ask for.”

Toni Braxton

Toni Braxton and son

Grammy Award-winning singer Toni Braxton’s son, 8-year-old Diezel, was diagnosed with autism when he was 3. She has been open about their journey over the past five years. Toni strongly believes in the importance early diagnosis.

“Early diagnosis makes a lifetime of difference,” Braxton says. “We have him in occupational therapy, speech therapy, he’s being mainstreamed [and] he’s in public school, general [education]. He does have his special ed therapies, but we are very, very lucky.”

Doug Flutie

Doug Flutie and son

Former NFL quarterback Doug Flutie’s son, Doug Flutie Jr., was diagnosed with autism. He reportedly was developing normally and speaking until the age of 2, when he gradually stopped talking all together.

Tommy Hilfiger

Tommy Hilfiger

Both of Tommy Hilfiger’s children are on the autism spectrum and he and his wife Dee Ocleppo are very vocal in the autism community.

Although these celebrities are speaking out and raising awareness about Autism, it is still greatly underfunded. You can make a difference by donating today.

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Penny War Fundraiser for Rare Diseases

Join the Belnap Family in the Penny War for Rare Diseases!

Penny War PosterBlue 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.

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Visit the Foundation for Mitochondrial Medicine to learn more about mitochondrial diseases and how you can help save lives.

 

Austin Childers Dies after Long Battle with Mitochondrial Disease

Austin Childers

Austin Childers

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.”

Childers Family

Austin with his parents and brother Garrett.

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.

Austin Childers football

First Presbyterian Day School football

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 Childers Field Dedication

First Presbyterian Day School field dedication on Aug. 30, 2014.

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.

Accelerating Medicines Partnership Brings New Opportunities for Drug Discovery

Researchers Image

It is very exciting to see the latest announcement from the NIH which represents a new strategy to combine forces and funds of three significant groups: the National Institute of Health, biopharmaceutical companies and several non-profit organizations. Pilot projects will focus on three key areas: 1) Alzheimer’s disease 2) type 2 diabetes, and 3) rheumatoid arthritis and lupus. Their goal is to increase new therapies and diagnostics. We applaud the approach and are especially enthusiastic since two of the three focus areas have mitochondria as one of their core causes.

FMM is a firm believer in the cross-functional collaborative approach. In fact, our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund a “Mitochondrial Drug Discovery Project,” is an example of focusing on what we have in common—the mitochondria—and pooling resources to benefit everyone. Soon, we will be announcing the recipient of the FMM-ADDF award, along with more of these types of research joint ventures.

In the name of all of those with Alzheimer’s and mitochondrial disease, join our effort. Donate at hopeflies.org

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

 

 

 

Spicing Up Mitochondrial Research

Provencal Rub spice blend 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 sold 139 snow cones to raise money for FMM and mitochondrial disease research.

Katie sold 139 snow cones to raise money for FMM and mitochondrial disease research.

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!

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

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!

Leave the Cocktail Dress at Home – You Can Attend This Fundraiser in Your Pajamas!

Sebastien's smiles banner 2013[2]

The inaugural Hope Flies Sebastien’s Smiles event, a fundraiser for the Foundation for Mitochondrial Medicine, was held in October 2012 at the Tampa Yacht and Country Club and raised $35,000 for the Foundation. The event was held to honor of 13-year-old Sebastien Setin who has mitochondrial disease. Sebastien is the oldest child of Sandra and Christophe Setin of Tampa.

For 2013, we are holding a virtual Hope Flies Sebastien’s Smiles to show our support for Sebastien and the Setin Family. With a virtual fundraiser, you have the pleasure of showing your support for the cause without having to get dressed in your cocktail attire. Between November 1, 2013 and December 31, 2013, supporters can secure sponsorships and make donations on line and save the dry cleaning bill for next time.  The website for the virtual fundraiser is www.mitochondrialdiseases.org/hope-flies-sebastiens-smiles.

“We were really inspired by the support for our event last year,” said Sandra Setin. “The community really embraced our cause, especially the Tampa Yacht and Country Club where Christophe is chef.  We still need more awareness about mitochondrial disease and for everyone to understand the importance of the role mitochondria play in our health and how it impacts the patients affected by mitochondrial disorders.” Chef Christophe has also created Provencal Spice Rub – a savory blend of 17 individual spices from his native Provence, France – and is donating a portion of the proceeds of all sales to the Foundation. The Provencal Spice Rub is available at www.chefjeanchristophe.com and at Tampa-area Fresh Market stores.

According to Sandra, Sebastien loves to do things a typical 13-year-old boy enjoys, such as playing video games, watching sports on TV and until last year, playing baseball.

“He does all of these things despite the fact  that his mitochondria don’t make enough energy for him to function normally.  He works hard and makes it through the day, but it’s heartbreaking to see him struggle.  This disease really takes a toll and there is a real sense of urgency.” said Sandra.

According to Laura Stanley, executive director for the Foundation for Mitochondrial Medicine, “1 in 2,500 people are affected with mitochondrial disease, and that number increases dramatically if you factor other mitochondria-related diseases including autism, Alzheimer’s or Parkinson’s disease. 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.”

The Foundation’s mission is to support and accelerate the development of the most promising mitochondrial disease research and treatments of the many forms of mitochondrial disease. To donate to Hope Flies Sebastien’s Smiles, please visit www.mitochondrialdiseases.org/hope-flies-sebastiens-smiles and for more information about the Foundation please go to www.mitochondrialdiseases.org.

Jeweler Roberto Coin Personal Appearance and Trunk Show To Benefit the Foundation for Mitochondrial Medicine

Christy-Turlington-for-Roberto-Coin-Fall-Winter-2011.12-DesignSceneNet-01Shop for a Cause November 1 at Saks Fifth Avenue Atlanta

Saks Fifth Avenue Atlanta is hosting a personal appearance with renowned Italian jeweler Roberto Coin and a trunk show of his pieces on Friday, November 1 from 1 to 4 p.m. Roberto Coin and Saks Fifth Avenue will donate 10% of the event sales to the Foundation for Mitochondrial Medicine. Saks will provide beverages and light hors d’oeuvres for guests.

The Foundation for Mitochondrial Medicine supports the development of the most promising research and treatments of the many forms of mitochondrial disease.  A cure for mitochondrial disease could impact cures for Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease and more.  For more information on the Foundation for Mitochondrial Medicine, please visit www.mitochondrialdiseases.org

Event Details:
Friday, November 1, 2013
1:00 – 4:00 pm
Saks Fifth Avenue
3440 Peachtree Rd NE
Atlanta, GA 30326

For more information on the event please call: 404-812-7259.

About Roberto Coin:
Iroberto-coinn 1977, Roberto Coin founded the company that would bear his name in Vicenza, the city of Gold. Initially, the company was intended for production on behalf of some of the most prestigious brands of international fine jewelry. The Roberto Coin brand was launched in 1996. Success was quick and extraordinary. By 2000, only four years after the brand’s birth, Roberto Coin positioned itself seventh amongst the best-known jewelry brands in the United States. Two years later in 2002, the brand ranked third in the international panorama and first among Italian jewelers. The headquarters is in Vicenza, Italy and is assisted by foreign branches as well as by Roberto Coin Inc. on Fifth Avenue in New York City. (profile provided from www.robertocoin.com)

Hope Flies Event Raises More than $210,000 for Mitochondrial Disease Research

Photos by Jen Pair Photography

Danielle and Jim Poppens, Laura Stanley, David and Laura Green

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.

Photos by Jen Pair Photography

Photos by Jen Pair Photography

“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.

Photos by Jen Pair Photography

Hope Flies Catch the Cure 2013 Organizing Committee

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 info@mitochondrialdiseases.org  For more information on the Foundation, please visit www.mitochondrialdiseases.org.

 

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