Foundation for Mitochondrial Medicine 2013 Annual Report

Major Donors$10,000 and aboveFuture Digital1111 FoundationStealth Peptides IncorporatedMary R. Gilbert Trust

$5,000-$7,500Boyd Collar Nolen & TuggleMr. David CohenMr. and Mrs. Richard W. Courts IVHublotMr. and Mrs. Donald KesslerMr. and Mrs. Keith HylandMedical NeurogeneticsMr. and Mrs. John RobinsonMr. and Mrs. Meade StoneDrs. John and Karen ShoffnerMr. and Mrs. Harold WyattMr. and Mrs. Frank Wren

$3,000-$4,999Mr. and Mrs. Neville IsdellMr. and Mrs. Todd LaceyMr. and Mrs. John LloydMs. Maurie Mintz and Mr. Markus PokertMr. and Mrs. Patrick Wulf

$2,000-$2,999Mr. and Mrs. Rusty ColemanMr. and Mrs. Clay CourtsMr. and Mrs. Ben Garren Jr.Mr. and Mrs. David GreenThe Hudson Family FoundationIsdell Family FoundationMr. and Mrs. Merrick OlivesMr. and Mrs. Bill SheppardMr. and Mrs. Ricks TuckerMs. Laura Stanley and Mr. Michael Van de PlanqueMr. and Mrs. W. Dan WrightMr. and Mrs. Rusty Coleman

$1,000 - $1,999Mr. and Mrs. Joey AlbertArizona Community FoundationMr. and Mrs. Neal AronsonMr. and Mrs. Manny AroraThe Atlanta BravesAtlas Copco Compressors LLCMr. and Mrs. Matt CaineMr. and Mrs. Jason NortonEQUIFAXMr. and Mrs. Jim FrankMr. and Mrs. Bob GreenMr. and Mrs. David P. HigginsMr. and Mrs. Harold HudsonIntercontinentalExchange, Inc.

Mr. and Mrs. Mark KesslerMr. and Mrs. Larry KleinMr. and Mrs. Chris MartinNeiman MarcusMr. and Mrs. Erwin ReidMr. Griff StanleyPatricia Bowman Terwilliger Family Foundation Charitable TrustMrs. Pam Perkowski and Mr. Mark van WeegenWebster BankMr. and Mrs. Iwan Williams

$500-$999Mr. and Mrs. Andrew AbernathyMr. and Mrs. Tim AdamsAlpha Oxy-MedAmerican Textile CompanyMr. and Mrs. Manny AroraBalch CompaniesMr. and Mrs. Zan BanksMr. and Mrs. Matthew BarteltMr. Richard Beebe, Jr.Mr. and Mrs. John BencichMs. Paula BevingtonMr. Dick BogerMr. and Mrs. Bill BollwerkMr. Gabe BoveMr. and Mrs. Pat BrumbaughMs. Louise CherryChick-fil-AMr. and Mrs. Rodes ColeMr. and Mrs. Brian CollinsCota ConstructionMr. and Mrs. Aaron DanzigDrs. Whitely and DasilvaMr. and Mrs. Jim DefurioMr. and Mrs. David DombrowskiMr. and Mrs. Carl DrakeMr. and Mrs. David EdmistonMrs. Laura FrittsMr. and Mrs. Jeffrey FisherMr. and Mrs. Tony GainesMs. Emily Giffin & Mr. Buddy BlahaMr. and Mrs. David GraceyMs. Alison Stuebe and Mr. Geoffrey GreenMr. and Mrs. Richard GriggsMr. and Mrs. Greg GrizzleMs. Julia HaesemeyerMr. and Mrs. Tom HoughMs. Patricia HurterJames-Bates-Brannan-Groover-LLPMr. and Mrs. Keith JerniganMr. and Mrs. Mark KauffmanMs. Dee KrueageMr. and Mrs. Jim LandersMr. and Mrs. Ben LaPointe

LDJ Enterprise, Inc dba ServPro of NewingtonMs. Patricia LeFebvreThe Little Bake ShoppeMr. and Mrs. Wade McKenzieMr. and Mrs. John MoriMr. and Mrs. Bruce MoskowitzMr. and Mrs. Douglas NicholsMr. and Mrs. John NortonNutmeg Restaurant - Krini LLCMr. and Mrs. Michael OuweleenMr. and Mrs. Timothy PaynePeerless Tool & Machine Company, IncPetit Family FoundationMr. and Mrs. Frank ReeseRenn Wealth ManagementMr. and Mrs. Jake RingMr. and Mrs. Marvin RosenbergSAKS IncorporatedMs. Molly Smalley and Mr. Brian ScalesMr. Roger ShafferMr. and Mrs. Blayne SheltonMr. and Mrs. Kenny SolomonSouthern Auto Sales, IncMr. and Mrs. David StallingsMs. Karen Klein and Mr. David StearnsMr. and Mrs. Joe StewartMr. and Mrs. Randall StreetSuntrust BankMr. and Mrs. Hugh Tarbutton Jr.Ms. Tracey Tiska and Mr. Peter TomlinsonTRICK 3DMr. and Mrs. Jonathan TuggleMr. and Mrs. Ed UrquhartMr. and Mrs. Jeff UsseryBret Watts AutomotiveMr. and 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: [email protected]

J.B. McGee’s Family

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

Hope Flies For FriendsFebruary 20, 2014 Ponte Verde Beach, FL

Partners for the CuresMarch 6 & 27, 2014 Atlanta, GA/Chattanooga, TN

Hope Flies Walk for AbbyApril 26, 2014 Broad Brook, CT

Color Run - Miles in Memory of MichaelaJune 2, 2014 Portland, ME

Hope Flies with the BravesJuly 26, 2014 Turner Field, Atlanta, GA

Hope Flies Stars for AudreySeptember 13, 2014 Greenwood, IN

Hope Flies Catch the CureSeptember 19, 2014 Atlanta, GA

FMM Scientific SummitSeptember 20, 2014 Atlanta, GA

Firefly RunOctober, 2014 Atlanta, GA

Interested in supporting one of our events? Contact us at [email protected].

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, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.

Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.

Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail.

Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.

J.B. McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.

THE FACES OF MITOCHONDRIAL DISEASE

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

FireFlyerThe

Board of DirectorsFred BlankenshipDick BogerDavid GreenKeith Hyland, Ph.D.Steve Rothschild

Dr. John Shoffner, M.D.Anthony SosciaFrank WrenTerri Wren

Laura StanleyExecutive Director

Morgan SmithOperations Manager

2013 Annual Report

Dear FMM supporters:

On behalf of our Board of Directors and everyone worldwide affected by mitochondrial disease and the many related diseases, I’d like to thank you for your continued support of the Foundation for Mitochondrial Medicine. 2013 was a year filled with many new fruitful opportunities, particularly in our efforts to fund cures and fuel connections. FMM is now poised for expansion of our initiatives, and we look forward to exciting developments in this coming year.

We are extremely pleased to announce the recent addition of new Board of Directors and Advisory Committee members and look forward to their contributions to FMM’s growth and success in 2014 and beyond:Fred Blankenship WSB-TV News Anchor Dick Boger Lex-Tex InternationalAnthony Soscia Atlantic Pharmaceuticals and Advisory Committee members include: Bob Baxter, Korn/Ferry International; Nate Bennett, Georgia State University; Paula Bevington, Bevington Advisors; Brian Dorrien, Venadar; Rich Fabritius, Brunner Advertising; and Russ Lipari, Validus Group.

We are very proud to announce our partnership with the Alzheimer’s Drug Discovery Foundation to co-fund innovative translational research for mitochondrial dysfunction. In 2014 and beyond, we look to continue our partnership with the ADDF as well as expand our collaborative efforts with other organizations also dedicated to funding cures for diseases with mitochondrial dysfunction as a core element.

In September 2014, we will celebrate the 5th anniversary of our first Hope Flies event, our Atlanta Hope Flies Catch the Cure, which has raised more than $850,000 since its inception. As we prepare for the year ahead, we have our sights set on continued growth, expansion and partnerships. We thank you for your continued support of our organization through your dedication to fundraising, attending and organizing events, volunteering, connecting us with new partners, and increasing awareness to help FMM lead the way to treatments and cures.

Most sincerely,

Executive DirectorFoundation for Mitochondrial Medicine

2013 Hope Flies Catch the Cure Pictured from left to right: Danielle & Jim Poppins, Laura Stanley, Dr. John Shoffner, Laura & David Green

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2013 Annual Report

Most sincerely,

The Foundation for Mitochondrial Medicine (FMM) is thrilled to be part of the Georgia Coalition Fighting Parkinson’s. On September 26th, FMM joined several other local groups at a ”house party” to celebrate the premiere of the new Michael J. Fox television show. Michael J. Fox has been living with Parkinson’s for over twenty years and through his non-profit, the Michael J. Fox Foundation, he works tirelessly to fund research to cure the disease. The party hosted by Wilkins Parkinson’s Foundation, co-founder, Bill Wilkins, was joined by 60 people, including representatives of several local and national organizations, from the Emory Udall Center to the American Parkinson’s Disease Association.

Meet Katie Parsons, FMM’s first Firefly Friend!Katie Parsons is an engaging 11-year-old girl from Marietta, Ga. She is an outgoing, happy 6th-grader who loves riding and jumping horses. In many regards, Katie is just like her classmates, except that she has mitochondrial disease. Since her diagnosis, Katie’s condition has constantly evolved through highs and lows. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing would be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to function.

Katie is now a young philanthropist who is raising 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 snow cones for FMM!

This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Hope Flies with the Braves event. 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 on 11 Alive’s Random Acts of Kindness, and she was honored as FMM’s first Firefly Friend, a program honoring youth and teens who are raising awareness and funds for mitochondrial disease. Check out more Firefly Friends: www.hopeflies.org/FireflyFriends

2013 Success Highlights and Financial Overview “THE YEAR OF PARTNERSHIPS”

• FMM partners with the NY based Alzheimer’s Drug Discovery Foundation to fund a $200,000 Mitochondrial Drug Discovery Project

• Addition of new Board of Directors and Advisory Committee Members

• New Hope Flies regional events throughout the country, including Hope Flies Stars for Audrey in Indiana, Hope Flies Miles in Memory of Michaela, in Maine and Hope Flies with the Atlanta Braves

• Firefly Friends Program for Youth raising awareness and funds for mitochondrial disease

Fueling Connections Leading the Way

FMM Teams with the Georgia Coalition Fighting Parkinson’s and Wilkins Parkinson’s Foundation

Event HighlightsRaising Awareness: Hope Flies Signature Events

FMM Partners with the Alzheimer’s Drug Discovery Foundation to Provide Grant for Drug Development for Novel Mitochondrial-Directed Therapies

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.

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.

In August 2013, The Alzheimer’s Drug Discover Foundation (ADDF) and the Foundation for Mitochondrial Medicine (FMM) announced a partnership to drive innovative translational research for mitochondrial dysfunction. The ADDF and FMM will provide a grant of up to $200,000 for a one-year duration with the possibility of follow-on funding.

Mitochondrial dysfunction underlies many different diseases. The brain is particularly vulnerable to changes in energy use that occur with age or because of underlying disease pathology. Novel therapies that can correct defects in mitochondria functioning have the potential to impact many different diseases — from early childhood genetic diseases to late-life neurodegenerative diseases such as Alzheimer’s disease.

Priority areas for the grant include the discovery and development of new drugs that alter mitochondria function; discovery and development of novel biomarkers of mitochondria dysfunction; validation of mitochondrial assays for drug discovery and development; and repurposing or screen existing drugs for activities related to mitochondria function.

The ADDF-FMM grant has been awarded to James Bennett, M.D., Ph.D., of Virginia Commonwealth University, to further

research gene therapy of mitochondrial protein in the brains of mice with experimental Alzheimer’s disease. Dr. Bennett is studying rhTFAM, a novel human mitochondrial protein shown to increase mitochondrial function in cell and animal models. The protein has shown to restore memory function of aged mice while increasing mitochondrial function in brains, suggesting it has great potential to do the same in humans with impaired cognition and early Alzheimer’s disease.

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 { { }

1 2 3 Raising Awareness

Fueling Connections to Related Diseases

Funding Treatment-oriented Research

HOPE DOES FLY!

In December 2012, FMM kicked off the Hope Flies Athlete program. Our campaign to grow this program continued throughout this year with participation in Atlanta’s first Firefly Run, and we look forward to continued expansion throughout the country in 2014. We encourage athletes of every age, and skill level to become a Hope Flies Athlete and help raise awareness and funds in honor of someone you know with mitochondrial and related diseases. Any athletic endeavor qualifies, and it is easy to participate. Simply create a personal fundraising page, pick an event, create a team and get involved! Visit our Hope Flies Athlete website and learn more.

Please contact us at [email protected] to get started.

Join Us in 2014 as a Hope Flies Athlete

HOPE FLIES STARS FOR AUDREY: New among Hope Flies events, this year, on September 14, in Greenwood Indiana, FMM and the Howe family hosted a successful benefit evening and spectacular lantern launch to honor their five year old, Audrey. FMM Ambassador, Colby Wren was on hand at the event as friends and family members of the Howe family raised over $17,000 and celebrated Audrey.

HOPE FLIES WALK FOR ABBY: Many thanks also to the Sauerhoefer family of Broad Brook, CT, who organized the third annual Walk for Abby. This annual event has become an all-out community family fun day with a 3 mile walk, face-painting, food and entertainment and in 2013 raised nearly $50,000 and had 500 participants.

HOPE FLIES CATCH THE CURE: Other Hope Flies fundraising and awareness events continued including, the Firefly Run, an illuminated night-time 5K race and FMM’s signature Atlanta party — Hope Flies Catch the Cure, honoring Laura and David Green and daughter, Ellie. This year’s party featured new elements including Firefly Lounge sponsor, Hublot, the luxury watchmaker and a preview of FMM’s “Get Your Glow On” Awareness campaign.

Foundation for Mitochondrial Medicine • www.mitochondrial diseases.com

How to Support the Foundation for Mitochondrial Medicine

1) PARTICIPATE IN A HOPE FLIES EVENT— volunteer or attend a regional Hope Flies event or join our Hope Flies Athletes 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.

Our Annual Firefly Fund as an additional contribution channel serves 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.

Georgia Parkinson’s Disease Coalition working together to Find the Cure. Pictured left to right: Daniel Wilkins (WPF), Bill Wilkins (WPF), Eric Burkard (APDA), Melanie Pearson (Emory Udall), Laura Stanley (Foundation for Mitochondrial Medicine), Annie Long (National Parkinson Foundation), Dr. Thomas Wichmann (Emory Udall)

Hope Flies Athletes Hope Flies Catch the Cure Firefly Run, Atlanta

Dr. James Bennett — Recipient of ADDF-FMM 2014 Mitochondrial Drug Discovery Grant

FMM’s strategy continues to emphasize a theme of partnership, collaboration and venture philanthropy. Funding for our mission currently comes primarily from individual donors and through our Hope Flies awareness and fundraising events. We continue to focus on diversifying our revenue model and look forward to increased revenues from private foundations, major donors and corporate partners.

Financially, in 2013, revenues totaled $333,588, with a noteworthy contribution coming from the Mary and Roland Gilbert Trust, to support our new Mitochondrial Drug Discovery project. FMM’s 2013 expenses totaled $508,172, exceeding revenues, primarily due to a significant strategic investment from cash reserves to fund program expenses like, the Mitochondrial Drug Discovery project and the foundational elements of a new “Get Your Glow On” Awareness Campaign. FMM strives to meet or exceed relevant best practice standards in its use of donor dollars. According to the BBB Giving Alliance, non-profits should spend at least 65% of its total expenses on programming activities to fund the mission, with remaining funds going to management/general operating and fundraising expenses. FMM’s program expenses were 72% of total expenses. These program expenses were for funding treatment-oriented research, awareness and information programs and partnership initiatives with related disease groups. In 2014, we will aggressively seek further funding support for joint-venture research projects, such as mitochondrial drug discovery projects, with like-minded organizations, as we believe that collaboration is the key to accelerating treatments for so many. We continue to support our priorities:

Program Expenses 72%

Fundraising Expenses 17%

Management & General Expenses 11%

Funding the Cures

of ways.

HOPE DOES FLY!

Muscular Dystrophy

Chronic Fatigue

Huntington’s

Lou Gehrig’s

Epilepsy

Cardiomyopathy

Developmental Delay

Cerebral Palsy

Funding the Cures

of ways.

HOPE DOES FLY!

Muscular Dystrophy

Chronic Fatigue

Huntington’s

Lou Gehrig’s

Epilepsy

Cardiomyopathy

Developmental Delay

Cerebral Palsy

Funding the Cures

of ways.

HOPE DOES FLY!

Muscular Dystrophy

Chronic Fatigue

Huntington’s

Lou Gehrig’s

Epilepsy

Cardiomyopathy

Developmental Delay

Cerebral Palsy

Funding the Cures

of ways.

HOPE DOES FLY!

Muscular Dystrophy

Chronic Fatigue

Huntington’s

Lou Gehrig’s

Epilepsy

Cardiomyopathy

Developmental Delay

Cerebral Palsy

FireFlyerThe

2013 Annual Report

Most sincerely,

FireFlyerThe

2013 Annual Report

Most sincerely,

THE FACES OF MITOCHONDRIAL DISEASEN

FireFlyerThe

2013 Annual Report

Most sincerely,

Foundation for Mitochondrial Medicine 2013 Annual Report

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