Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Hope Flies Mile Climb in Memory of Kirra

Hope Flies Mile Climb for Mito in Memory of Kirra is a family-friendly event supported by an energized community of volunteers, donors and friends honoring the mitochondrial and related disease community while raising awareness and funds for mitochondrial disease treatment and research on behalf of the Foundation for Mitochondrial Medicine, a non-profit based in Atlanta.

Hope Flies Mile Climb for Mito was created by Atlanta firefighter Kato Baythavong in memory of his daughter, Kirra, who passed away from Leigh’s Disease, a fatal form of mitochondrial disease. More than 100 firefighters dressed in full gear will lead the climb, along with their families, friends and supporters. When you join the Hope Flies Mile Climb for Mito community, whether it be as a walker, volunteer, donor, sponsor or cheerleader, you bring hope to those facing a rare or chronic illness. Thank you for helping Hope Fly!

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Hope Flies Catch the Cure 2018

Save the Date! Friday, September 21, 2018. Stay tuned for more information…..

To learn about sponsorship opportunities, email info@mitochondrialdiseases.org.

It’s easy to join our mailing list! Just send your email address by text message: Text HOPEFLIES to 22828 to get started.

Hope Flies® with Gratitude for the Holidays

Hope Flies® with Gratitude for the Holidays
During this holiday season, we reflect back on the year with gratitude for all of our volunteers, supporters, families and friends. Many thanks to each and every one of you for your contributions of time, energy and resources, helping us on our journey to raising awareness for mitochondrial disease, fueling connections and partnerships and funding treatments towards the cures.
2017 was an exciting year filled with progress and highlights:
  • Rare Disease Day: Heightened awareness and buzz with new #Give28on28campaign
  • SE Regional Mitochondrial SymposiumResearch links and progress announced at FMM-UMDF Symposium in Birmingham, AL
  • Walk for Abby: Hundreds of walkers and fans of Abby Sauerhoefer gather in Broad Brook, CT
  • Hope Flies® with Braves: sold out crowd at new SunTrust Park for Hope Flies with the Braves
  • Bioenergetics: Advancement on cutting-edge research in Bioenergetics leading towards CLIA application for blood test assessing mitochondrial function
  • Southeast CliniciansDr. Leon Dure of AL Children’s Hospital and Dr. Doug Stuart, Atlanta-based adult neurologist, ready to serve adult and pediatric patients
  • Global Mitochondrial Disease Awareness Week: Educational infographiccollaboration with MitoAction and UMDF
  • Hope Flies® Catch the Cure: 8th Annual event was Flying success, chaired by the talented duo, Kyle Hinson and Anne Worrell
  • Stealth Biotherapeutics: Opportunity for patients to enroll in Phase 3 Clinical Trial for elamipretide
  • Drive for Drew: $30,000 raised and golfers galore at new event
We look forward to the coming year with anticipation and wish all of you health, rest and rejuvenation. Please continue on this critical journey with us in 2018; we have great things in store!

 

 

It’s easy to join our mailing list! Just send your email address by text message: Text HOPEFLIES to 22828 to get started.

Global Mitochondrial Disease Awareness Week

September 18 – 24 is Global Mitochondrial Disease Awareness Week (GMDAW)

Organizations around the world dedicated to finding a cure and helping families affected by mitochondrial disease unite this week in an effort to build awareness of the disease and the need for further research.

Today, the Foundation for Mitochondrial Medicine launches the awareness week with simple daily activities that each of you can do to help us spread awareness about the disease. If everyone does just a few of these, you will help us raise critical understanding about mitochondrial function and disease.

The Foundation will cap the week with its annual Hope Flies Catch the Cure fundraiser on Friday, September 23 at the Stave Room at American Spirit Works. A fun night of cocktails, dinner, dancing and auctions, Hope Flies Catch the Cure helps raise funds to continue the Foundation’s mission to fund a cure, fuel connections and lead the way in mitochondrial disease research.

Change your social media profile pictures to FMM’s GMDAW logo today and keep it up all week. Post why you’re helping build awareness this week.

Make this your profile picture to raise awareness for mitochondrial disease!

Make this your profile picture to raise awareness for mitochondrial disease!

The Foundation for Mitochondrial Medicine will denote each day of the week with an awareness activity for all of our supporters to participate in and help spread awareness of mitochondrial disease. Here’s a quick list of the things you can do to help this week:

  • Change your Facebook Profile Picture to an FMM graphic
  • Share a story on social media about why your hope flies
  • Participate in the Foundation Fund-A-Need with our Hope Flies Catch the Cure Event
  • Calculate and share your “Firefly Number” by totaling the number of people you know with mitochondrial disease, diabetes, Alzheimer’s, Autism, chronic fatigue syndrome, ALS and Parkinson’s disease.
  • Join the Foundation for the Hope Flies Catch the Cure gala on Friday, September 23 and share pictures on social media; tag your posts with #hopeflies
  • Listen to STAR 94 for radio spots mentioning the awareness week

Your participation will help make this year’s Global Mitochondrial Disease Awareness Week a huge success and help raise critical funds needed for mitochondrial disease research. Make plans now to help share messages of hope and awareness starting September 18!

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Global Mitochondrial Disease Awareness Calendar of Activities:

Let’s Keep Our Hope Flying for Desmond Gray

Desmond Gray, one of our nearest and dearest, lost his battle with mitochondrial disease at the age of 22. Desmond passed away on March 12, 2016 in his hometown of Anderson, SC.

He was an advocate for raising awareness and for eliminating misunderstandings.  Not long before he died, Desmond asked his mother to promise to tell his story

Please help us honor Desmond’s wishes by sharing his story.  Collectively, we will continue to make his hope fly!

 

{DESMOND ADGER GRAY}


Demond at Hope Flies Catch the Cure as One of Our Voices of Mitochondrial Disease.Desmond was diagnosed with mitochondrial disease in August 2009 after a muscle biopsy at age 15. Life was good until 4th grade when problems started with abdominal pain and rectal bleeding. Then shortly after that the pain in his joints began. This was the start of multiple doctors visit, test, medications and misdiagnosis. The disease to him looked like a thief that steels your chance for a normal life from you and all that love you. It has caused so much pain and heartache from being so misunderstood and misdiagnosed.  He was originally diagnosed as juvenile arthritis, crohns, colitis, lazy and just not wanting to go to school. He had to think about this every day of my life. It’s has caused him not to be able to go to school since the 5th grade. He was been homebound due to all my pain, doctor visits and hospital stays. He had to think of my condition when making simple everyday choices. Simple activities cause him chronic fatigue and sometimes overheating. He lived with nausea, vomiting, headaches, abdominal pain, rectal pain/bleeding and fatigue every day.

Desmond’s life was been changed by not having friends from going to school to do things with and create the memories to look back on in my later years. He had to use the little energy that I have to get out of bed and do simple things to get through the day. He had hopes and dreams that a cure is found in the near future.  He hoped to get a college education and have enough energy to have a job. Desmond also hoped his experiences would help someone else have hope.

Desmond did exactly that “he kept his head up and stayed strong.” Desmond met his adversity head on. Curtis, Vickey, and Cameron, you can be most proud of him. His gentle spirit and kindness are examples for us all. He had an infectious smile that was contagious. Most importantly, despite his lack of energy, you can hear in his story, his vitality, and what he valued. He cared for others, “he loved one another” and I can assure you that his hope for “his experiences to help others” will not be in vain. Desmond asked his mother recently to make sure we tell his story. So, let’s all leave here today with the promise to honor Desmond by telling his story.

On behalf of all of the people who wake up every day feeling more tired than the day before;

On behalf of all the people who one day keep up with their peers, “going full speed,” but the next day crash and burn and need twice as long as others to recover;

On behalf of the people whose lives, like Desmond’s, did not last as long as they should have because this disease robbed them of quality and years,

Please tell someone of Desmond’s courage, tell someone of his smile, tell someone of his mitochondrial disease,
and most importantly, tell someone of his hope. Desmond’s choice of hope and finding the gifts in his struggles sustained him
and can sustain us. Thank you Desmond for helping our hope fly.

DONATE

 

 

Plenty New at the Seventh Annual Hope Flies® Catch the Cure Event

Mark your calendars for Friday, September 23 for the seventh annual celebration of Hope Flies Catch the Cure to benefit the Foundation for Mitochondrial Medicine. In addition to the great night you’ve come to expect from Hope Flies Catch the Cure, we are excited to debut several new features at 2016 event.

What’s New with this year’s Hope Flies Catch the Cure?

The Stave Room at American Spirit Works

The Stave Room at American Spirit Works

New Location – Hope Flies Catch the Cure will be at The Stave Room at American Spirit Works, located at 199 Armour Drive in Atlanta. While the address might seem familiar (the space was formerly the Mason Murer Art Gallery), the space has been completely renovated and converted into a special events facility adjacent to American Spirit Works whiskey distillery. It is a refined, yet rustic space with warm urban charm.

New Format – This year instead of a buffet dinner, we will serve a seated family-style dinner with five delicious courses from Endive Catering. Entrees include flavorful herbed chicken breasts and tender short ribs. Be sure and save room for dessert, because Endive will end the meal with its signature bite-size sweets.

Star941-Primary-FullColorNew Sponsors – Join us in welcoming new sponsors to our event: Fidelity Bank, The Boston Red Sox and Boston Red Sox Foundation and STAR 94 FM radio station. Attendees will have a chance to bid on one-of-a-kind experiences during the live and silent auction. We’re also thrilled to hear our new radio spots promoting event over the STAR 94 airwaves in Atlanta!

The event will feature open bars, decor by Track Seven Events, table settings and floral by Rooms & Blooms, dance music by Amp’d Entertainment, and a live auction and silent auction directed by Dean Crownover. The auctions will have vacation homes, travel, art, home decor, shopping sprees, jewelry, sports memorabilia, an outdoor lighting package and much more. The event will also have a photo garden and a caricature artist.

Tickets to the event are $200 per person and various sponsorship packages are available. The event hopes to raise at least $250,000 and all proceeds benefit the foundation and its mission to accelerate treatments and cures for the many, many forms of mitochondrial diseases.

Hope Flies Catch the Cure is the Foundation’s annual signature event in Atlanta. For more information or to buy tickets to the event, please visit www.hopeflies.org.

 

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Sixth Annual Walk for Abby Fundraiser – Saturday, April 23, 2016

Walk for Abby, the sixth annual fundraiser inspired by local Broad Brook resident Abby Sauerhoefer, will take place on Saturday, April 23, 2016 at 10 am at East Windsor Park, 27 Reservoir Street in Broad Brook.

Abbys-Helping-Hand-Logo1Abby, age 8, is the daughter of Carol and Joseph Sauerhoefer and has mitochondrial disease. This is the sixth annual walk in her honor, and the event has raised over $200,000 since its inception in 2011.

Cost to participate is $20 per adult and $10 for students and kids age 12 and under. Walkers may either register in advance at www.abbyshelpinghand.com or register beginning at 8:30 am on the day of the event.

In addition to the walk, the family-oriented event will also feature a raffle of fun prizes, children’s activities, a DJ, refreshments and more. All proceeds from the event will benefit Abby’s Helping Hand and provide assistance to those with mitochondrial diseases and other chronic disease through support, education and research.

Research funds will go to the Foundation for Mitochondrial Medicine. For more information on mitochondrial disease, please visit the foundation’s website at www.mitochondrialdiseases.org.

Abby’s Story: 
Eight year old Abby Sauerhoefer attends Broad Brook Elementary. Abby has struggled with breathing and feeding issues from birth. Immediately following birth, Abby was admitted to the NICU for pneumonia.  She had difficulty feeding and maintaining normal body temperature.  After one week she was discharged and welcomed home.  By two Abby - Walk for Abby 2014months, 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. Throughout her first two years of life she was tested for multiple neurological diseases.  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 wheelchair.

Abby attends school every day where she receives physical and occupational therapy.  She splits her day with her third grade friends and pre-K activities such as coloring and painting with assistance from her nurse, ‘Miss Laura’.  Abby has many friends who read to her and help her through her day.  She is often invited to birthday parties and attends as many community events as possible.

 

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Sad News of One of Our Hope Flies Voices – Desmond Gray

Dear FMM Friends,
Quote.DesmondDesmond Gray, one of our nearest and dearest, lost his battle with mitochondrial disease at the age of  22. Desmond passed away on March 12th in his hometown of Anderson, SC.

I was particularly honored to know Desmond, to know his courage and to see his hope.   He was an advocate for raising awareness and for eliminating misunderstandings.  Not long before he died, Desmond asked his mother to promise to tell his story.  Following are remarks I made at his funeral services.  Please help us honor Desmond’s wishes by sharing his story.  Collectively, we will continue to make his hope fly!

With much fondness and dedication to Desmond and all of the families and friends impacted by mitochondrial disease,
Laura Stanley


 

Good Afternoon,
My name is Laura Stanley and I had the pleasure and privilege of meeting Desmond and his family in the Fall of 2011. I am both humbled and honored that Vickey asked me to help share Desmond’s story and my memories of him.

I met the Gray family because of what some might call unfortunate circumstances—we met because of mitochondrial disease. And while yes, the disease itself is unfortunate, the connections made because of it are far from unfortunate. In fact, as you hear more about it and Desmond’s story, you’ll see that despite the day-to-day fatigue and impairments, his spirit and his encounters, were far from unfortunate, they were gifts of joy and hope.

Desmond GrayNo one wants a disease, no one wants pain and suffering. Especially, as a parent, no one wants to see their child endure struggles and hardships that we can’t fix. I experienced those feelings with my own son’s mitochondrial disease diagnosis and yet, over the last six years I’ve met people like Desmond, who are examples of courage and who manage to find the gifts in their hardships. Meeting Desmond has been a gift for me and it never would have happened if he and my son both didn’t have mitochondrial disease.

For a bit of brief background information, let me tell you about mitochondrial disease. This disease, or group of diseases, while seemingly rare, in fact, affects 1 in 2,500 people, adults, children and teenagers. No two stories are alike, but the common thread, is fatigue in varying levels. It’s just like a power plant not producing enough electricity. In some cases, the lights may just flicker and in other cases, the lights might go completely out.

Mitochondria are the power plants of the cells in our bodies. They make energy for our bodies to operate. Mitochondria turn the food we eat into ATP or energy for all of our organs and systems–organs like the brain, heart and muscles.   Mitochondrial disease or this “energy production problem” occurs when our organs, like brain, heart, muscles, digestive systems and more, don’t get the energy they need from these cellular power plants and in turn, malfunction.

In Desmond’s case, things were complicated. He had multiple systems that didn’t function like they should. He struggled with being misunderstood and misdiagnosed for years. He lived with mitochondrial disease, as he put it, “every single day.” In 2011, he shared his story with me and since then, generously continued to be a spokesperson for the Foundation for Mitochondrial Medicine. At our annual Hope Flies Catch the Cure gala for the past two years, he and his family travelled to Atlanta for the event and Desmond courageously stood on stage in front of a crowd of nearly 400 people to tell everyone what it is like to have mitochondrial disease. These are his own words from 2011:

{DESMOND ADGER GRAY}
My current age is 17, will be 18 November 14, 2011. I was diagnosed with mitochondrial disease in August 2009 after a muscle biopsy at age 15. Life was good until 4th grade when problems started with abdominal pain and rectal bleeding. Then shortly after that the pain in my joints began. This was the start of multiple doctors visit, test, medications and misdiagnosis. The disease to me looks like a thief that steels your chance for a normal life from you and all that love you. It has caused so much pain and heartache from being so misunderstood and misdiagnosed. I was originally diagnosed as juvenile arthritis, crohns, colitis, lazy and just not wanting to go to school. I have to think about this every day of my life. It’s has caused me not to be able to go to school since the 5th grade. I have been homebound due to all my pain, doctor visits and hospital stays. I have to think of my condition when making simple everyday choices. Simple activities cause me chronic fatigue and sometimes overheating. I live with nausea, vomiting, headaches, abdominal pain, rectal pain/bleeding and fatigue every day.

       My life has been changed by not having friends from going to school to do things with and create the memories to look back on in my later years. I have to use the little energy that I have to get out of bed and do simple things to get through my day. I hope and dream that a cure is found in the near future. I pray I will be able to have the energy and good health to enjoy my life. I hope to get a college education and have enough energy to have a job. I also hope my past experiences will help someone else have hope.

       My family is still trying to adjust to this disease. Everything that this disease has caused to happen in my life has been hard for my family to understand. In the last year the support has been better. We all have more understanding now since we have seen so many specialists. Since this all started I have seen around 25 doctors. We travel from Anderson to Greenville, Atlanta and have been to Duke. We are expecting our next visit soon to be in Cleveland. I continue to try to keep my head up and stay strong.

Desmond did exactly that “he kept his head up and stayed strong.” Desmond met his adversity head on. Curtis, Vickey, and Cameron, you can be most proud of him. His gentle spirit and kindness are examples for us all. He had an infectious smile that was contagious. Most importantly, despite his lack of energy, you can hear in his story, his vitality, and what he valued. He cared for others, “he loved one another” and I can assure you that his hope for “his experiences to help others” will not be in vain. Desmond asked his mother recently to make sure we tell his story. So, let’s all leave here today with the promise to honor Desmond by telling his story.

On behalf of all of the people who wake up every day feeling more tired than the day before;

On behalf of all the people who one day keep up with their peers, “going full speed,” but the next day crash and burn and need twice as long as others to recover;

On behalf of the people whose lives, like Desmond’s, did not last as long as they should have because this disease robbed them of quality and years,

Please tell someone of Desmond’s courage, tell someone of his smile, tell someone of his mitochondrial disease, and most importantly, tell someone of his hope. Desmond’s choice of hope and finding the gifts in his struggles sustained him and can sustain us. Thank you Desmond for helping our hope fly.

 

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Walk for Abby Celebrated it’s 5th Year with a BANG!

Walk for Abby raises almost $200,000 in 5 Years!

20150425_091532On Saturday, April 25th, more than 580 walkers, volunteers and supporters gathered for the 5th Annual Walk for Abby in Broad Brook, CT.  Walk for Abby was founded by the Sauerhoefer Family and the Foundation for Mitochondrial Medicine.  As of 2014, Abby’s Helping Hand, a non-profit working to improve the quality of life for those afflicted with mitochondrial and other chronic diseases, is the official host for this family, fun-filled day to raise awareness for mitochondrial disease and other chronic diseases.

Walk for Abby

FMM Executive Director, Laura Stanley, with Carol and Abby Sauerhoefer

A special thanks to Elizabeth Granolati for being the event’s photographer, to everyone who donated non-perishable items and to the over 580 walkers present at this year’s event.  Because of this community’s continued support, Walk for Abby raised over $45,000 this year and has raised almost $200,000 since it began five years ago.

Mark your calendars for next year’s Walk for Abby – Saturday, April 23, 2016!

Abby’s Story (From Abby’s Helping Hand Website):
Seven year old Abby Sauerhoefer attends Broad Brook Elementary. Abby has struggled with breathing and feeding issues from birth. Immediately following birth, Abby was admitted to the NICU for pneumonia.  She had difficulty feeding and maintaining normal body temperature.  After one week she was discharged and welcomed home.  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. Throughout her first two years of life she was tested for multiple neurological diseases.  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 wheelchair.

Abby attends school every day where she receives physical and occupational therapy.  She splits her day with her second grade friends and pre-K activities such as coloring and painting with assistance from her nurse, ‘Miss Laura’.  Abby has many friends who read to her and help her through her day.  She is often invited to birthday parties and attends as many community events as possible.

 

Hope Flies for Friends Raises over $10,000 for Mitochondrial Disease Research

The third annual Hope Flies for Friends, the fundraiser to honor local Jacksonville area residents Lauren Quinn, Caroline Sacco and Stacy Young and to benefit the Foundation for Mitochondrial Medicine, raised $10,000+ this year.  Attendees participated in the wine tasting event and enjoyed a beautiful evening at Table One restaurant in Ponte Vedra on April 16.  Dr. Wolfdieter Springer with the Department of Neuroscience at the Mayo Clinic in Jacksonville also attended the event.  The Foundation co-sponsored research along with the Michael J. Fox Foundation for Dr. Springer. He is targeting a mitochondrial-targeted therapeutic approach to Parkinson’s disease.

Hope Flies for Friends Honorary Chairs - Amanda, Lauren and Stacy

Hope Flies for Friends Honorary Chairs – Amanda, Lauren and Stacy

Lauren Quinn, a high school senior, 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 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.

During high school, she was able to start playing on the lacrosse team.  This year, she completed the season, and couldn’t be happier.  This year, she will graduate from The Bolles School.  Lauren will attend Queens University in Charlotte, North Carolina in the Fall 2015, and was awarded two scholarships. She was the only recipient of the Knight School of Communications scholarship.

Stacy medical problems prior to age 11 were insignificant. At age 12, she was misdiagnosed with mononucleosis, but never got better. After numerous doctor visits and misdiagnoses, she was finally diagnosed with mitochondrial disease at the age of 16. Her symptoms continue to progress and change frequently, sometimes on a daily or hourly basis. The unpredictability of her symptoms is extremely challenging to cope with because she never knows what the day/moment will bring. There have been periods of time when she cannot walk and other times when she is able to dance.

Caroline Sacco is ten 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 receiving intensive early intervention services. 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. Although her mitochondrial disease is considered mild, it affects many of her body’s systems and she sees multiple medical specialists to help manage the effects Mito has on her body. Caroline loves swimming, taking horseback riding lessons, and being with her friends when she feels well.

 

“We were delighted to host this event and to help support research funds for mitochondrial disease,” said event organizers Lisha Wise and Phyllis Bove.  “Honoring Lauren, Stacy and Caroline was important because mitochondrial disease affects as many as 1 in 2,500 people. A cure for mitochondrial disease can have a positive impact on many other diseases, including Autism, Alzheimer’s and Parkinson’s disease.”

All proceeds from the event benefited the Foundation for Mitochondrial Medicine to fund treatment-oriented research and awareness. For more information on mitochondrial disease, please visit the foundation’s website at www.mitochondrialdiseases.org.

It is not too late to make a difference!  Donate to Hope Flies for Friends TODAY!

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