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2012 Annual Report

Dear FMM Supporters:

After several years and multiple misdiagnoses, in 2009, one of my sons was finally correctly diagnosed with mitochondrial disease. When your child is diagnosed with any disease, you do your homework. You research and you learn more and unfortunately, in most cases of mitochondrial disease, the journey to diagnosis is not clear cut. In one moment of early despair, I truly thought I had only two options: 1) start medical school or 2) start the “Foundation for Mystery Diseases,” because no one could give me the answers I needed or help my child. Fortunately, I was introduced to the Foundation for Mitochondrial Medicine, and in 2010, I joined the

Foundation as its first Executive Director because I wanted to raise awareness and do whatever I could to help find treatments and cures for this disease that, at times, has consumed my family.

On behalf of our Board of Directors, and the 1 in 2,500 people affected by mitochondrial disease, thank you for your continued support of the Foundation for Mitochondrial Medicine (FMM). As a friend of the Foundation, you know that in 2010, we re-launched, re-branded and re-energized by hosting Hope Flies Catch the Cure in Atlanta and raising over $200,000. Because of the success of this event, Hope Flies became our signature fundraising program and we have continued to host Hope Flies Catch the Cure in Atlanta, and added events in other areas of the country, including the Hope Flies Walk for Abby in Connecticut and Hope Flies Sebastian Smiles in Florida and the Hope Flies Home Run Challenge with Georgia Tech. In 2012, FMM hosted actress and philanthropist Holly Robinson Peete — an advocate for Autism and Parkinson’s disease — as the keynote speaker at the first Hope Flies Health Series where Ms. Robinson Peete was joined by a panel of medical experts to discuss the connections between Autism, Parkinson’s and mitochondrial disease. In addition to these great informational and fundraising opportunities, since 2010 FMM has also funded three treatment-oriented research projects. We could not have had these successes without your support — thank you!

Looking ahead, we will continue to host regional Hope Flies awareness and fundraising events and will introduce new ones, such as our Hope Flies Athlete Program. We will also continue the discussion about the link between Autism, Parkinson’s and mitochondrial disease, and host a second Hope Flies Health Series program likely examining the link between Alzheimer’s and mitochondrial disease.

Because of your generosity, over the last three years, FMM has raised over $750,000 for our mission to support the development of the most promising mitochondrial disease research and treatments. It is because of this mission that in 2013, FMM will launch a campaign to meet Phase 1 of our research goals, a pre-clinical trial drug feasibility study. I am excited to partner with you to reach this goal that has the potential to impact so many families.

FMM is proud of how far we’ve come in these last three years, and is excited for the places we will go. Thank you for your continued support of our growth as we fund the cures, fuel connections and lead the way.

Warmly,

Laura StanleyExecutive Director

Board of Directors

David GreenKeith Hyland, Ph.D.Steve RothschildDr. John Shoffner, M.D.

Sandra SetinFrank WrenTerri Wren

Laura StanleyExecutive Director

“Hope Flies for Mama Connections”: Laura Stanley, FMM Executive Director, Actress Holly Robinson Peete, FMM Board Member, Sandra Setin

2012 Successes and financial Overview “The Year of ouTreach”

• fMRI grant to Georgia State and Georgia Tech Universities

• 4 new key regional fundraising and awareness events

• 2 new Shop for the Cures partners: Neiman Marcus, Rebecca Taylor, along with Jimmy Choo, Saks 5th Avenue and David Yurman

• Launch of new Health Series program in conjunction with related diseases

• Published White Paper—The Case for Mitochondrial Dysfunction

• Hope Flies Athlete Program begins

• Increased revenues by $138,534

Finances grew stronger in 2012. Revenues increased 54%, from $256,399 in 2011 to $394,933 in 2012, thanks primarily to new regional events in Tampa and Atlanta and major gifts from community-minded corporate partners like Saks 5th Avenue, and David Yurman. Expenses rose also, and still slightly exceed revenue, but only by 2.7% as compared with 12.4% last year.

Consistent with organizations early in their life cycle, FMM allocates over 40% of the budget to Program Services, including research. Fundraising

expenses represent 38% of the budget, while 20% of expenses are allocated to Management and General Operating. As our revenue model shifts to a stream less dominated by special events, we anticipate fundraising expenses to decrease. We look forward to increased revenues from private foundations, corporations and major donors.

We continue to support our priorities:

What’s in a Name?In 1898, Dr. Carl Benda coined the term “mitochondria,” which was derived from the Greek terms “mitos” (thread) and “chondros” (grandules), which describe the appearance of the mitochondrion as viewed during early cellular development.

Did You Know? • Almost all cells in the body have mitochondria, tiny “power plants” that produce a body’s essential energy.

• The disease can appear at any age.

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Revenues Expenses2012 $394,933 $405,5032011 $259,399 $291,510

1 2 3Awareness Fueling connections to related diseases

Funding treatment-oriented research

Research Progress HighlightFMM’s 2011 grant to Netherlands’ research team, led by Dr. Jan Smeitink, hascontributed to promising results. The result of this project is that new efficientcompounds have been obtained, including one of which or more has the potency to endup as a new mitochondrial drug. Based on these promising results, to which the FMM grantcontributed, Dr. Smeitink’s team was recently awarded a 3 million Euro grant via the Dutch ZonMW PMRARE initiative. More details can be found in recent peer reviewed manuscripts New England Journal of Medicine and EMBO Journal.

FMM’s 2012 grant to Dr. Robin Morris and his team of researchers at the Department of Psychology at Georgia State University for a joint research study at the Georgia State/Georgia Tech Joint Center for Advanced Brain Imaging is finding cognitive fatigue in children’s brain function of children with mitochondrial disease. Using Functional Magnetic Resonance Imaging and other technology, the aim of the study, originally funded by the DoD, is to determine if children with oxidative phosphorylation (OXPHOS) defects in mitochondrial disease/dysfunction show indices of brain “fatigue” through testing by functional MRI (fMRI), diffusion tensor imaging (DTI) and neuropsychological testing. OXPHOS is a cellular metabolic process the body uses to turn oxidation of nutrients into energy. While the study is ongoing, early trends note a very diverse pattern of developmental outcomes of the children who were diagnosed with Autism or ASD and mitochondrial disease when they were much younger, but who now do not meet the various research criteria for these disorders that are standardly used (ADI-R or ADOS (or both) criteria). The research team continues to focus on the clear issue of cognitive fatigue in these children and hopes to have fMRI results that will provide a more quantitative method for documenting that factor and its impact on these children’s functioning in the near future.

funding the Cures

The mitochondria represent

the most complicated enzyme

system in the body, requiring

over 1,000 genes to function

properly. With so many genes,

patients can present in hundreds

of ways.

• fatigue• pain • seizures• poor growth• diabetes• muscle weakness & loss• social behavior disorders• respiratory disorders

• thyroid problems• neurological problems• vision / hearing loss• migraines• learning disabilities• gastrointestinal disorders• dementia

Signs & Symptoms { }

This past November 2012, the Foundation for Mitochondrial Medicine (FMM) hosted its inaugural Hope Flies Health Series: An Evening with Holly Robinson Peete at the Four Seasons Hotel in Atlanta. This debut program was a wonderful success with nearly 300 guests in attendance and helped raise awareness and fuel connections among closely-related diseases including mitochondrial disease, autism and Parkinson’s.

Keynote speaker, actress and autism and Parkinson’s advocate, Holly Robinson Peete, shared her journey with her father’s Parkinson’s and her son’s autism and how she has become an advocate on behalf of her family and how others can do the same. Our panel of clinical experts: Dr. Martha Herbert, Robin Morris, Ph.D., Dr. John Shoffner and Dr. Zbigniew Wszolek, offered practical information and gave hope to families for the future as they shared

exciting details of emerging research and treatments for mitochondrial disease, autism & Parkinson’s disease.The inaugural Hope Flies Health Series served as a tremendous catalyst to help fuel connections and heighten awareness between several key collaborative organizations closely related to mitochondrial disease including Autism Speaks, The Marcus Autism Center, American Parkinson’s Disease Foundation (APDA), Wilkins Parkinson’s Foundation and the Michael J. Fox Foundation. Through the Hope Flies Health Series, we have planted wonderful seeds that we are confident willgrow and bloom into long-term collaborations between FMM and these organizations. Fueling connections that evening transpired in many inspirational ways: such as a Parkinson’s patient exchanging history and data for research with world renowned expert, Dr. Wszolek or the excitement and synergy when two of the medical experts met face-to-face for the first time, despite years of research together.

We are grateful to our sponsors: Stealth Peptides, Hearts and Hands Therapy Services, Amicus Therapeutics, Knopp Biosciences, Medical Neurogenetics Laboratory (MNG), Northside Hospital and Dickey Media. Their generous contributions made it possible for us to underwrite attendance of many deserving faculty and family members throughout the Southeast.

We look forward to sharing additional updates with our FMM friends & families as we expand our Hope Flies Health Series and information offerings throughout 2013.

As a reminder, footage from the Hope Flies Health Series: An Evening with Holly Robinson Peete program is available on the FMM website.

fueling ConnectionsProgram HighlightHope flies Health Series 2012: An Evening with Holly Robinson Peete

Did You Know? • According to the CDC, 1 in 2,500 is affected by mitochondrial disease.

• Mitochondrial disease is an energy production problem.

• Mitochondrial disease means that the power plants in cells don’t function properly creating an energy crisis, as if the body has a power failure.

funding the Cures

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Leading the WayEvent HighlightRaising Awareness: Hope Flies Walk for Abby, Broad Brook, CT

HoPe DoeS FLy!

Join our first 2012 Hope Flies Athletes, Blayne Shelton of Dunwoody, GA and Team Lauren, (Lauren Quinn) of Jacksonville, FL to become a Hope Flies Athlete by participating in any athletic endeavor, a 5K, 10K, marathon or any athletic event of your choosing. This new fundraising program launched in December 2012 at the Jacksonville, FL marathon, where Blayne ran in honor of his five year old daughter, Audrey, and where Team Lauren was formed by the Mitochondrial Disease Awareness Club at the Bolles School, in honor of sophomore, Lauren Quinn. Together, they raised over $5,000.

Please contact us at athleteprogram@mitochondrialdiseases.org to get started.

New Grassroots Athletic fundraising Program

Become a Hope Flies Athlete!

The Sauerhoefer family and practically entire town of Broad Brook, CT came out for the second year in a row to honor young Abby Sauerhoefer, affected by mitochondrial disease. Not only was nearly $40,000 raised, but also just as importantly, the outpouring of support and heart-warming efforts continue to unfold in unexpected ways. The Littlest Bake Shoppe created firefly cupcakes and Abby’s friend’s mother who designs ribbons and hats for little girls has created a firefly hairpiece called, “The Abby.” FMM sends its sincerest gratitude to the Sauerhoefer family, their friends and town of Broad Brook for raising awareness, fueling connections and funding the cures for mitochondrial disease. Hope Flies Catch the Cure, Atlanta, GA FMM’s 3rd Annual Hope Flies Catch the Cure on September 14 was another big success, raising over $200,000. Heartfelt thanks to honorary chairs, Margaret and Chris Martin and Heather and David Edmiston and Virginia and Matt Maguire 2012 party chairs. Held at Mason Murer Art Gallery, over 450 guests enjoyed the fun-filled evening of art, silent and live auctions, delicious dinner from Endive Fine Catering, cocktails from Georgia Crown Distributing and dancing to Yacht Rock Revue.

Foundation for Mitochondrial Medicine • www.mitochondrial diseases.com

How to Support the foundation for Mitochondrial Medicine

1) PARticiPAtE in A HoPE FliEs EvEnt— attend a regional Hope Flies event, or become a Hope Flies Athlete with an athletic endeavor of your choice or launch one of your own. Contact us and we’ll show you the way.

2) FuEl tHE connEctions — share the story of how mitochondrial disease is related to so many common diseases. Connect with us on social media.

3) DonAtE — support a Hope Flies event, join our Annual Firefly Fund or make a general donation to our Campaign for the Cures.

As we have grown, we are excited to establish our Annual Firefly Fund as an additional contribution channel that will serve to supplement our additional fundraising campaigns and provide for operating and programmatic support.

Web of Connectivity Mitochondrial dysfunction is acentral element of familiar diseases.

Parkinson’s Autism

Alzheimer’s Mitochondrial Disease

Muscular Dystrophy

Chronic Fatigue

Huntington’s

Lou Gehrig’s

Epilepsy

Cardiomyopathy

Diabetes Fibromyalgia

Atypical LearningDisabilities

Developmental Delay

Cerebral Palsy

MitochondrialDysfunction

FAMILIAR CONNECTIONSMitochondrial dysfunction is a central element of familiar diseases.

Major Donors$6,000 and aboveatlanta charity claysMr. and Mrs. Matt MooneyMr. and Mrs. John MorganMr. and Mrs. Jim PoppensSaKS IncorporatedMr. and Mrs. frank WrenYurman Design, Inc.

$5,000-$5,999Boyd, collar, Nolen and TuggleMr. and Mrs. richard W. courts, IVMedical Neurogenetics, LLcJohn W. robinson family foundation, Inc.Mr. and Mrs. John robinson, IIIStealth Peptides, Incorporated

$4,000-$4,999Mr. Donald KesslerMr. and Mrs. Patrick G. renn

$3,000 - $3,999Mr. and Mrs. Jeff hillMr. and Mrs. Merrick olivesMs. Julie SargentMrs. Laura Stanley & Mr. Michael Van de Planque

$2,000-$2,999Mr. and Mrs. Lowry BaldwinMrs. Bona BelnapMr. and Mrs. Ken BertholfMr. and Mrs. Mike BrownMr. and Mrs. clay courtsfidelity BankMr. and Mrs. David Greenhearts and hands Therapy ServicesMr. and Mrs. Tim hudsonIsdell family foundationMr. and Mrs. Matt MaguireMr. and Mrs. John MoriMr. and Mrs. ajay PancholyMr. and Mrs. Steve rothschildMr. and Mrs. Bill SheppardMr. and Mrs. Marko SonnenbergMr. and Mrs. ricks TuckerWells fargo Private BankMr. and Mrs. Douglas WestonMr. and Mrs. W. Dan WrightMr. and Mrs. harold Wyatt

$1,000 - $1,999Mr. and Mrs. Nick allenMr. and Mrs. Neal aronsonMr. and Mrs. Jeff BelkinMr. Nathan BennettThe atlanta BravesMr. and Mrs. Matt caineMr. and Mrs. Jack cayMarcy and Leona chanin foundation, Inc.Mr. and Mrs. rusty colemanMr. and Mrs. Jeffrey curtisamicus TherapeuticsMr. and Mrs. David DelmonteMr. and Mrs. David edmistonMr. and Mrs. Jeffrey fisherMr. fred fjeldMr. and Mrs. Jim frankMr. and Mrs. andrew frittsMr. and Mrs. David GraceyMr. and Mrs. Bob GreenMr. and Mrs. hayes GreepMr. and Mrs. Greg GrizzleMs. Julia haesemeyerMr. and Mrs. David P. higginsMr. and Mrs. Greg houtsMr. and Mrs. Travis huffinesKnopp Biosciences

Mr. and Mrs. Michael KellyMr. and Mrs. Mark KesslerMr. and Mrs. Larry KleinMr. and Mrs. Todd LaceyMs. Bonnie LeadbetterMr. and Mrs. Zachary LeeMr. and Mrs. Steven LehwaldMr. and Mrs. John LloydMr. and Mrs. David Lovecharlotte Martin, roy Martin, eric MartinMr. and Mrs. chris MartinMr. Leroy MartinNew hope Baptist church Northside hospitalNutmeg restaurant - Krini, LLcMr. Joseph orr, IVPinehill capital PartnersMr. and Mrs. erwin reidMr. and Mrs. James robbinsMr. and Mrs. Jason NortonMr. and Mrs. John NortonMr. and Mrs. Joseph richMr. and Mrs. Michael rossettiMr. and Mrs. Steff SchelkeSt. Bernard’s SchoolMs. Janet SmithMr. Norman Stallings, Jr.Mr. and Mrs. Griff StanleyMs. alechia SwaimMr. and Mrs. hugh Tarbutton, Jr.Mr. and Mrs. William ThauMs. heather TuckerWaters corporationMr. and Mrs. Buck Wiley, III

$500-$999Mr. Brice adamsonamerican Legion Postatlas copco compressors, LLcBalch companiesMr. and Mrs. chris BaugherMr and Mrs. John BencichMs. Paula BevingtonMs. Lindsey BishopWilliam N. Blake TrustMr. and Mrs. Jim BlitchMr. and Mrs. Dick BogerMr. and Mrs. Bill BollwerkMr. Benton BraggMr. and Mrs. charles BrewerMr. John BrumbaughMr. and Mrs. eric BuskoMr. and Mrs. chris caldwellMr. and Mrs. Brett carpenterMr. and Mrs. Daniel chanMs. Louise cherryJimmy chooMr. Mark cobbMr. and Mrs. rodes coleMr. and Mrs. a.D. corellMr. angelo D’aleoMr. and Mrs. Mark DannenfelserMs. Patti DickeyMr.and Mrs. Tom DolanMr. and Mrs. David DombrowskiMr. and Mrs. carl DrakeMr. and Mrs. cole ebertMs. elizabeth funkMs. Melissa Prewitt & Mr. Jim GannonGeorgia Prosthetics, Inc.Dr. and Mrs. Dave GermainThe hardman family foundationMr. and Mrs. Jim haganMr. and Mrs. charles harrisMr. and Mrs. Bob hillMr. and Mrs. ed holmes

Mr. and Mrs. Tom houghMr. and Mrs. George howellMr. and Mrs. russ huntIntercontinentalexchange, Inc.Mr. and Mrs. Paul IzlarJames-Bates-Brannan-Groover-LLPMr. and Mrs. Keith JerniganMr. and Mrs. Siles Kellett, Jr.Mr. and Mrs. Jim LandersMr. and Mrs. Boyd LeakeMs. Patricia LefebvreLetourneau Bros. construction, LLcMr. and Mrs. Peter LindemanMr. and Mrs. Mark KaufmanMr. and Mrs. Gregory MarksMr. and Mrs. Mike MccloskeyMr. and Mrs. John MccollumMr. and Mrs. Wade McKenzieMr. and Mrs. Greg MichellMr. and Mrs. Prescott MillerMr. and Mrs. George MoriMr. and Mrs. Bruce MoskowitzMr. and Mrs. Douglas NicholsMr. and Mrs. richard NolenMr. and Mrs. Patrick NortonMs. Krystyna PaluchMr. and Mrs. Timothy PaynePeerless Tool & Machine company, Inc.Mrs. Pam Perkowski and Mr. Mark van WeegenPetit family foundationMr. and Mrs. Murray reavisMr. and Mrs. James robbinsMs. Jane romanoMr. and Mrs. Peter rosenbaumMr. and Mrs. Marvin rosenbergMr. and Mrs. reid ruttenbergMr. and Mrs. Blayne SheltonMr. and Mrs. Joel SilverfieldMr. and Mrs. Dan SkinnerMr. and Mrs. Kenny SolomonSouthern auto Sales, Inc.Mr. and Mrs. David StallingsMr. and Mrs. Joe StewartMs. Mary elizabeth StoneMr. and Mrs. Steve StraskeMr and Mrs. randall StreetMr. and Mrs. Ben TarbuttonMr. harry TeasleyMr. ralph ThomasMr. Trey ThomasMs. Marguerite TimmelMr. and Mrs. Jonathan TuggleMr. and Mrs. Joe VarnerDrs. Whiteley and Dasila, D.M.D, LLcMr. and Mrs. Patrick WillisMr. & Mrs. Scott Yates

*Thank you to all of our donors. any and all levels of support makes our hope fly. Please let us know if we have inadvertently had an error in the above list: info@mitochondrialdiseases.org

The Belnap family

Upcoming EventsCheck out www.hopeflies.org for all of the details

Hope Flies Home Run challengeFebruary 15-May 18, 2013 Atlanta, GA

Hope Flies Miles in Memory of MichaelaApril 20, 2013 Biddeford, ME

Hope Flies Walk for AbbyApril 27, 2013 Broad Brook, CT

Hope Flies AthletesJune 8, 2013 Wallsburg, UT

Hope Flies AthletesJuly 4, 2013 Atlanta, GA

Hope Flies stars for Audreyseptember 14, 2013 Indianapolis, IN

Hope Flies catch the cureseptember 20, 2013 Atlanta, GA

Hope Flies Athletesnovember 9, 2013 Savannah, GA

Hope Flies AthletesDecember 15, 2013 Jacksonville, FL

Interested in supporting one of our events? Contact us at info@mitochondrialdiseases.org.

Ralph Waldo Emerson said: “Life is a journey, not a destination.” We are the parents of four wonderful children. We have fun together and we work hard. One of our family’s mottos is “The Belnaps can do hard things.” We enjoy the outdoors and traveling to new places. We have big plans for our children and want them to be happy. All seemed to be going well in our home. Things started to change in the fall of 2008 when our youngest child, Seth, developed some unusual neurological symptoms. Our destinations became hospitals and doctor’s appointments, not soccer games or soccer camps. We have been to many hospitals and doctors who did not know what was wrong with our sweet little boy Seth. The journey began and has taken us all over this country and world both physically and electronically.

Our journey led us to Atlanta, Georgia where Dr. John Shoffner confirmed that Seth had Leigh’s Syndrome, a form of mitochondrial disease. We thought the journey would only be with one of our children, but, asthe journey continued, our oldest daughter was diagnosed shortly after Seth. Then, in the spring of 2012, we were broadsided when our oldest son, Spencer, was also diagnosed with mitochondrial disease. This disease is terrible and discriminates against no one. Mitochondrial disease has no cure and no effective treatments. Our pledge to our children is that we will do whatever it takes to help find better treatments and eventually a cure.

Please join Team Belnap in our cause to raise money for research and increase awareness for mitochondrial disease. Please join us as we swim, bike, and run because they can’t. The Belnaps and their friends have become Hope Flies Athletes and have plans to participate in several athletic events in 2013. Read more about their story at: www.ndbelnap.com.

“We swim, bike, and run because they can’t.” —The Belnap Family, Arizona

THE FACES OF MITOCHONDRIAL DISEASE

Did You Know? Mitochondrial disease is more common than childhood cancer.

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5424 Glenridge Drive NEAtlanta, GA 30342

Phone 1.888.448.1495Web mitochondrialdiseases.org