Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine
7th of December 2016
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The Fireflyer Newsletter – December

  Winter 2016 12/6/16 Noon EST teleconference for Mitochondrial Myopathy clinical trial discussion Mitochondrial Myopathy research teleconference Tuesday, Dec. 6th at Noon, EST.   This summer, Stealth BioTherapeutics (Stealth BT) shared preliminary positive data from the MMPOWER study. Study purpose was to evaluate safety and efficacy of elamipretide (previously known as Bendavia) in adults with […]

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11th of October 2016
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The Fireflyer Newsletter – Fall 2016

  Fall 2016 Seventh Annual Hope Flies® Catch the Cure Event Raises Over $250,000 for Mitochondrial Disease Awareness and Research 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, […]

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5th of September 2016
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The Fireflyer Newsletter – August 2016

The Fireflyer Newsletter – August 2016   August 2016 Why Our Hope Flies – Grace and the Martin Family Grace’s family paces themselves and takes life day by day. “We are never sure what the day will hold for us. In spite of these issues, Grace is a loving child who has a heart of […]

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1st of June 2016
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The Fireflyer Newsletter – May 2016

  May 2016 Hope Flies Catch the Cure – Join Us on September 23rd!   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 […]

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24th of August 2013

One Disease, Many Faces – J.B. McGee’s Family Story

For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease. J.B McGee’s first child, Noah, […]

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13th of June 2013

FMM Celebrates Newest Atlanta Braves Player, Kyle Wren!

Kudos to Kyle Wren, who was recently drafted to play baseball for the Atlanta Braves!  As the son of FMM board member Frank Wren and the brother of FMM ambassador Colby Wren, Kyle is an integral part of the FMM team, and we are so very proud of his success.  Best of luck to Kyle […]

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21st of May 2013

Hope Flies – Walk for Abby Raises $50,000

Hope Flies – Walk for Abby, the third annual 3 mile walk and fundraiser to honor local Broad Brook resident Abby Sauerhoefer and the Foundation for Mitochondrial Medicine, was held Saturday, April 27, 2013 at Broad Brook Elementary School and raised $50,000 for the Foundation for Mitochondrial Medicine. Abby, age 5, is the daughter of […]

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24th of February 2013

IRA Charitable Rollover Provision Can Help Your Favorite Charity

On January 2, 2013, as part of legislation to resolve the so-called “fiscal cliff,” Congress reinstated the Individual Retirement Account (IRA) Qualified Charitable Rollover provision, which allows individuals aged 70 ½ or older to make charitable donations directly from their IRA without recognizing income. The prior law expired on December 31, 2011, but Congress just […]

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Upload a Photo to “Handprints Across America” in Support of Mitochondrial Disease – Foundation for Mitochondrial Disease Marks 6th Annual Rare Disease Day

February 28, 2013 marks the 6th annual Rare Disease Day – an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  According to the Orphan Drug Act of 1983, any disease affecting fewer than 200,000 people is considered rare.  There are nearly 7,000 rare diseases affecting nearly 30 million […]

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