Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Seventh Annual Hope Flies® Catch the Cure Event Raises Over $250,000 for Mitochondrial Disease Awareness and Research

Hope Flies® Catch the Cure’s New Venue and Format Well Liked by Attendees

HFCTC2016.RobinsonMartin

John and Margaret Robinson, 2016 Honorary Chairs, pictured with Margaret and Chris Martin, 2012 Honorary Chairs

The Foundation for Mitochondrial Medicine held its seventh annual celebration of Hope Flies Catch the Cure on September 23 at the Stave Room at American Spirits Distillery in Atlanta. Approximately 350 guests enjoyed the event, including open bars, a sit-down dinner, silent and live auctions, raffles and dancing to hits spun by from Track Seven Events.   The live auction featured several getaways, including vacation stays for golfing vacations, Paris and Dominican Republic stays and a one-a-kind Red Sox baseball VIP experience at Fenway Park. The silent auction featured vacation homes, travel, art, home decor, Currie jewelry, dining, lunch and makeovers at Neiman Marcus and an outdoor home lighting package from Outdoor Lights. The raffle included a classic Gucci handbag and a Big Green Egg. Guests also enjoyed a specialty cocktail provided by local boutique distillery American Spirit Works.

Event attendees that would like to purchase photos from the event are encouraged to visit this link to view and purchase photos: https://goo.gl/Vlmq2e

Honorary party chairs were Margaret and John Robinson, longtime supporters of the Foundation and grandparents to Grace Martin, who has mitochondrial disease. The Foundation also paid tribute to Desmond Gray, an advocate for mitochondrial disease awareness and friend of the Foundation who lost his battle with the disease earlier this year at age 22. The event raised over $250,000 and all proceeds benefit the foundation and its mission to accelerate treatments and cures for the many, many forms of mitochondrial diseases. Specifically, the Foundation for Mitochondrial Medicine (FMM) is supporting a new comprehensive mitochondrial disease clinical and research program at the University of Alabama at Birmingham (UAB) in conjunction with Seahorse Bioscience. The clinical program will diagnosis neuromuscular mitochondrial diseases using precision medicine models for monitoring therapeutic interventions.

FMM Executive Director, Laura Stanley, with Desmond Gray’s Family.

The shared academic, philanthropic and medical mission of the clinic is to revolutionize the treatment and diagnosis of mitochondrial diseases by establishing and integrating state-of-the-art techniques in bioenergetics and therapeutics using a precision medicine approach. The clinic plans to realize this vision by developing two parallel components: 1) a monthly multidisciplinary clinic to evaluate and care for adults and pediatric patients with mitochondrial disease and 2) a reference laboratory for metabolic bioenergetics focused on establishing mitochondrial-targeted clinical, noninvasive laboratory measurements and instruments.

“With the event reaching its 7th milestone this year, we wanted to incorporate a new energy and structure to the event his year,” said Laura Stanley, Executive Director of FMM. “The new venue, new program and new table hosts sponsorship level allowed us to evolve the event and keep the elements that our attendees love, including the dancing and auctions. Hope Flies® is instrumental in helping the foundation raise awareness and funds for treatments.”

The Foundation would like to thank the event sponsors including Party Sponsors: The Atlantan, Star 94, Track Seven Events, Jen Pair Photography, Endive Catering, Rooms in Bloom, Custom Signs Today, Michelle French Design, The Outdoor Lights, Social Flow, Sharecare, Woo Cosmetics, Booker Promotions and Mook Mills Cheese Straws. Platinum sponsors Adrian and John Robinson and Abby’s Helping Hand; and Gold Sponsors Frank and Susan Bishop, Boyd, Collar, Nolen & Tuggle, Global payments, J.C. Kennedy Foundation, Allison and Erwin Reid, John W. Robinson Family Foundation, Stealth BioTherapeutics, and Terri and Frank Wren. A full list of sponsors, table hosts and party sponsors can be found at www.hopeflies.org/catchthecure.

Hope Flies Catch the Cure is the Foundation’s annual signature event in Atlanta. Other 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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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:

Hope Flies Catch the Cure – Mark Your Calendar

HFCTC Web banner 2016

Hope Flies® Catch the Cure
Honoring Margaret and John Robinson
Friday, September 23, 2016 at The Stave Room

We are pleased to announce this year we are honoring Margaret and John Robinson for their support and advocacy on behalf of the entire mitochondrial disease community and in particular, granddaughter, Grace Martin.  During this year’s event will also be remembering fondly, Desmond Gray, one of our Voices of Hope Flies, who sadly lost his battle with mitochondrial disease this Spring at age 22.

Hope Flies Catch the Cure is Atlanta’s annual fun party of friends and friends of friends, promoting awareness for mitochondrial disease and raising funds for research and treatment, including the exciting new Clinical and Research Program at the University of Alabama at Birmingham

Since the Hope Flies® inception, awareness has increased for mitochondrial disease-an energy production problem—affecting 1 in 2,500 people.

Treating mitochondrial dysfunction continues to be a scientific priority in the fields of Alzheimer’s, Parkinson’s, diabetes, Autism, cardiac  disease, ALS even glaucoma and more.

Please help us reach our goal of raising $350,000 and become a sponsor today!  New sponsorship levels include reserved seating and a VIP Experience as well as a Table Host.  Click here to see all sponsorship levels and benefits.  To learn more about corporate sponsorships please contact us at:  info@mitochondrialdiseases.org

Become a Sponsor Today! 

Please join us today to sponsor or purchase tickets at www.hopeflies.org/catchthecure

 

Hope Flies Catch the Cure is Celebrating 5th Anniversary

Laura Stanley, Dr. Shoffner, Lane and Richard Courts at Hope Flies Catch the Cure 2010.

Laura Stanley, Dr. Shoffner, Lane and Richard Courts at Hope Flies Catch the Cure 2010.

Can you believe it has already been five years since a group of longtime pals and newly acquainted friends got together to “do something to raise awareness and funds for mitochondrial disease?” What started out as an idea to have a backyard party in a local home quickly began to morph into something so much more. Before we knew it, things had moved beyond a party, beyond the backyard and into a larger concept, movement and into the empty 18th  floor of Cousins Properties’ Terminus Building.

Frank and Terri Wren with Kim and Bill Shepherd. 2011 Hope Flies Catch the Cure Chairs.

Frank and Terri Wren with Kim and Bill Sheppard. 2011 Hope Flies Catch the Cure Chairs.

The original organizers, led by Lane and Richard Courts, consisted of:  Missy Courts, Liz Ebert, Heather Edmiston, Laura Green, Kimberly Ichter, Margaret Kauffman, Margaret Martin, Michele Nichols, Kim Sheppard, Laura Stanley and Elizabeth Yates.  These novice party planners pulled off an amazing first time event, which hosted 600 attendees and raised $220,000.

In 2011, the Hope Flies Catch the Cure committee was led by event chairs, Kim and Bill Sheppard with Honorary Chairs, Frank and Terri Wren.   Hope Flies Catch the Cure raised over $200,000 for it’s second year and had attendance of friends and family from across the nation.

Margaret Martin, Virginia Maguire and Heather Edmiston

Margaret Martin, Virginia Maguire and Heather Edmiston

In 2012, more than 450 guests enjoyed Hope Flies Catch the Cure at Mason Murer Art Gallery. The event raised approximately $220,000. Party chairs were Heather and David Edmiston and Virginia and Matt Maguire. Honorary party chairs were Margaret and Chris Martin.

Last year, Hope Flies Catch the Cure has held on a lovely September night at Mason Murer Art Gallery. Guests enjoyed dancing to retro ‘70s music from Yacht Rock Revue, delicious food from Endive catering, and open bars provided by Georgia Crown distributors. Danielle and Jim Poppens were event chairs, and honorary party chairs were Laura and David Green. More than $210,000 was raised and all proceeds benefit the foundation and its mission to fund research for mitochondrial disease treatments.

Hope Flies Catch the Cure 2013 Organizing Committee Members

Hope Flies Catch the Cure 2013 Organizing Committee Members

Over the past four year, Hope Flies Catch the Cure has nearly $850,000.  Help us exceed our goal to raise over 1 million dollars in five years and have a record breaking year in 2014.

We’re gearing up for a special 5th year anniversary celebration, to toast FMM’s progress. This year’s committee will be led by Cara and Todd Lacey with Honorary Chairs, Lane and Richard Courts.

 

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.

 

Why We’re Helping Fund a Cure

23_SG10490On Friday, September 20, we will serve as honorary event chairs for the Hope Flies Catch the Cure event to benefit the Foundation for Mitochondrial Disease. As you may know, our youngest daughter Ellie has mitochondrial disease and David serves on the Foundation board.  Ellie, age 11, is currently living with mitochondrial disease, an energy-production problem primarily affecting the brain, body, and muscles at many different levels of severity.

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.”

152_SG10619Ellie also suffers from seizures, muscle weakness and significant cognitive delays.  However, Ellie wakes up every day smiling and whether she is trying to climb up a slide backwards or fit a puzzle piece into its proper hole despite her trembling hand, she works harder than anyone we’ve ever seen.  While there is currently no cure and barely any treatment for this devastating disease, we are constantly inspired by Ellie’s determination and love for life.

It is our hope that you will consider attending this event and supporting the Foundation. All proceeds will benefit the Foundation for Mitochondrial Medicine. The event begins at 7:30 pm at the Mason Murer Fine Art Gallery and will include live dance music by the fun Yacht Rock Revue, dinner, open bar, silent auction and great raffle prizes. Tickets are $150 each and available at http://bit.ly/CatchtheCure2013. 

While a cure for mitochondrial disease could impact cures for Autism, Alzheimer’s, Muscular Dystrophy and Parkinson’s, there are currently no effective treatments. The Foundation for Mitochondrial Medicine’s purpose is to support the development of the most promising research and treatments of the many, many forms of mitochondrial disease. The Foundation is funding a path to a cure and making connections to other related diseases.

Hope Flies Catch the Cure is an opportunity for you to learn about the foundation, mitochondrial disease and to support this cause that is so close to our hearts. Thank you in advance for your consideration and support.

Sincerely,

Laura and David Green
Hope Flies Catch the Cure
2013 Honorary Chairs

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