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News Archive
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The funding by the Foundation for Mitochondrial Medicine will enable Smeitink and his research partners to use their specific and complementary expertise in developing new effective compounds to treat mitochondrial diseases. Dr. Smeitink's current research project aims to generate new compounds directed at novel drug targets. The project was also awarded a Eurostars Grant through the Eurostars Program, a multi-country program dedicated to research and development funded by European countries and 33 Eureka countries.
The FMM grant will enable Dr. Smeitink to further synthesize and test about 5 to 10 additional compound modifications and thereby increases the number of potential new medications for treatments. Back to top
Many thanks to the generous support of Saks Fifth Avenue and David Yurman for their contribution to FMM in conjunction with the special personal appearance of David Yurman at the Saks Atlanta store in late November. A large crowd of David Yurman fans came to mingle with the designer and to hear an up close and personal interview led by Saks President Ron Frasch. The event also offered couture pieces only available when David Yurman makes a personal appearance. Atlanta is one of the best markets for Yurman jewelry and FMM is grateful to have been chosen as a beneficiary by Saks and David Yurman. Back to top
Baseball Insider profiles Georgia Tech Baseball Player and FMM Ambassador and his challenges with mitochondrial disease. See the article in Baseball Insider.
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FMM Ambassador Colby Wren shares his story for CNN’s Sanjay Gupta’s Human Factor show. While just one example of the many, many forms of mitochondrial disease, Colby’s story is a voice for the many fighters of this disease. Back to top
The Outdoor Lights, an Atlanta-based, award-winning outdoor lighting firm that designs, installs and manages residential projects around the world and signature projects throughout Atlanta and the Southeast. The owners recently were commissioned to create a custom, copper, one-of-a-kind outdoor ‘firefly’ lantern to raise awareness and funds for The Foundation for Mitochondrial Medicine. Learn more here and order yours today from www.theoutdoorlights.com. Back to top
Mark your calendars, and please make plans to join us for a very special shopping event to benefit FMM. On November 29, from 6:30 to 8pm, at Saks Fifth Avenue – Phipps Plaza. David Yurman will make his first personal appearance at Saks Atlanta in 11 years. The Foundation for Mitochondrial Medicine has been selected as the event’s beneficiary.
In addition to a full trunk show of Yurman pieces, the event will feature Yurman couture pieces only available when David Yurman makes a personal appearance. The Foundation will benefit from 10% of Yurman sales all day, Tuesday, November 29.
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Mitochondrial disease picked the wrong guy. The genetic disorder that uses stealth to prey on its victims, terrorize concerned parents and baffle even the most highly trained doctors, has lodged itself into the cellular make-up of one Colby Wren. Bad move.
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We are excited to unveil a "Special Appeal" for Hope Flies 2011, and we’re inviting all of you to participate. The Hope Flies Catch the Cure Special Appeal is a call to specifically fund patients for a functional brain MRI study at the Georgia State and Georgia Tech Joint Center of Advanced Brain Imaging.
What is the purpose of the study? To understand how and why mitochondrial disease affects the brain. In particular, to 1) discover how energy in the brain is utilized and 2) follow how energy utilization improves with treatments.
It Only Takes a Spark to Get a Firefly Glowing... So please help us fund this fMRI study!
At Hope Flies 2011, track our progress to fund patients in this key fMRI study by watching Emmy Dudley paint a specially commissioned painting that depicts our "Journey of Hope" to treatments and a cure for mitochondrial disease. Learn more about Emmy at www.emmyart.com. Emmy’s completed painting will be auctioned off during the live auction.
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September 18, 2011 Global Mitochondrial Disease Awareness Week September 18-24, 2011 Across the globe, September 18-24 will be marked with various educational, fundraising and advocacy events to increase awareness of mitochondrial disease. The Foundation for Mitochondrial Medicine is a proud partner of this week, hosting several events in the southeast. Join us to support our cause, fund the cures and fuel connections.
Thursday, September 22, 2011 ; 11:00am-10:00pm Burlington, NC Frosty Treats in Support of the Foundation for Mitochondrial Medicine Visit the frozen yogurt shop of Holly Hill Mall and 10% of the days’ sales go to FMM
YoZone
Friday, September 23, 2011; 7:30 pm Marietta, GA Concert with Susan Schreer Davis, FMM Ambassador The Daily Grind
3960 Mary Eliza Trace http://www.cobblifemagazine.com/detail/1644.html
Thursday, September 29 6:00-8:30 Atlanta, GA Jimmy Choo and Sallie Rothschild Present a Hope Flies - Catch the Cure Shopping Kick Off Party Preview the Catherine Handbag Collection and the latest Fall Styles! Jimmy Choo Boutique Phipps Plaza Atlanta, Georgia
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We hope you’ve marked your calendars and purchased your tickets for Hope Flies 2011, Saturday, November 5! Tickets are selling fast, so be sure to purchase yours today. Visit www.hopeflies.org , and join us on Facebook and Twitter for the latest Hope Flies news and updates.
Now break in your party shoes and get ready to dance the night away. Band X will be rockin’ Hope Flies with its fun dance music and high-energy show. Check out this link for a sneak preview: http://www.bandxlive.com/promo.html or Follow Band X on Facebook.
The Foundation for Mitochondrial Medicine is also excited to announce the musical talents of one of our gracious Hope Flies ambassadors, Susan Schreer. In support of Global Mitochondrial Disease Awareness Week, Susan will appear in concert at The Daily Grind in Marietta on Friday, September 23 at 7:30 p.m. This special concert will feature the world premier of Susan’s touching song “Hope Flies”. We hope that you’ll be able to join us in support of Susan and Global Mitochondrial Disease Awareness Week.
Stay tuned for more Hope Flies details coming soon!!
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The 2011 Hope Flies Atlanta planning committee has been busy this summer, and we hope that you've made plans to join us on Saturday, November 5!
We also hope that you’ve considered joining us as a Hope Flies host or sponsor. Our deadline for invitation printing is August 31! Please confirm your sponsorship commitments by this date so that we can include you in our invitation.
Visit www.hopeflies.org to sign up.
Warmly,
Hosts:
Sponsors:
Be sure to follow us on Facebook and Twitter for the latest Hope Flies event updates and spread the word about Hope Flies 2011 by posting the event to your status. Back to top
Don’t miss the opportunity to attend the Foundation for Mitochondrial Medicine's 2nd annual fun-filled party, Hope Flies--Catch the Cure on Saturday, November 5, 2011. Hope Flies 2010 was a sold-out event with over 600 people attending and over $220,000 was raised for mitochondrial disease research and treatments.
This year’s event will feature dance music from Band X, a live auction and raffles for one-of-a-kind prizes, open bar and delicious delectables provided by Endive Catering. Honorary Chairs of the event are Frank and Terri Wren. Frank Wren is General Manager of the Atlanta Braves. Event co-chairs are Kim and Bill Sheppard. Individual tickets are $150 and all proceeds benefit the Foundation for Mitochondrial Disease.
To purchase tickets or become a sponsor please visit www.hopeflies.org.
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The FDA has approved an new expanded study to evaluate the safety and efficacy of Edison Pharmaceutical’s drug, EPI-743 in patients with severe mitochondrial respiratory chain diseases who are considered to be within 90 days of end-of-life care. For more information regarding eligibility for this trial please see: http://clinicaltrials.gov/ct2/show/NCT01370447?term=epi743&rank=1. Back to top
Event Details:
Where: Friday: Tampa Museum of Art, 120 W. Gasparilla Plaza, Tampa, Florida
Tickets: Friday: $25 includes a reception with light hors d’oeuvres
Saturday: $8.75
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Atlanta news anchor, Fred Blankenship, reports on research by Neurogeneticist and Foundation for Mitochondrial Medicine Board Member, Dr. John Shoffner, who has spent the last 20 years studying the connection between autism spectrum disorder and mitochondria disease. Mitochondria produce most of the energy the body needs. Shoffner said mitochondria dysfunction can be linked to a host of problems including Alzheimer's disease, Parkinson's disease and autism. Moreover, Dr. Shoffner and his team discovered that discovered that children who have autism and mitochondria disease together are a greater risk for autistic regression, especially when they have a fever. Dr. Shoffner's research was awarded one of the top 10 autism achievements of 2009 by the group Autism Speaks. He's currently working on a joint project with Georgia State University and Georgia Tech to study brain function of children with both mitochondrial disease and autism.
See the full WSB story from March 14 - click here. Back to top
Abby Sauerhoefer attends preschool at Broad Brook Elementary. Abby has struggled with breathing and feeding issues from birth. By two months, her parents knew something was terribly wrong when she started having frequent, uncontrolled movements of her arms and legs. They learned that these episodes were infantile spasms or seizures. 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 stroller. Support for the Foundation for Mitochondrial Medicine means funding for new treatments to help Abby and many others like her.
Details:
Registration Fee: $20 for adults, $10 for kids 12 yrs and older
Raffle/Silent auction items: Flat Screen TV, 4 front row orchestra seat tickets to West Side Story at The Bushnell in Hartford, Spa and hair salon gift baskets with gift certificates, Wine baskets and more.
Register on line at http://bit.ly/forabby or contact Carol Sauerhoefer @ 860-627-5119. Back to top
The Journal of the American Medical Association reports mitochondrial dysfunction may influence processes highly dependent on energy, such as neurodevelopment, and contribute to Autism. Back to top
The 21st Atlanta Charity Clays event will be held March 17-19 and the Foundation for Mitochondrial Medicine has been chosen as one of their special beneficiaries. The Atlanta Charity Clays committee was thrilled to disburse over $190,000 to 15 different charities following the 2010 event. The ACC is a powerful philanthropic effort supported by much of the Atlanta business community not only because of their love of the outdoors, but also more importantly because of their love for Atlanta’s children.
The Foundation of Mitochondrial Medicine is grateful for the generous support and interest by such a significant group of Atlantans. Back to top
Among some of the many mitochondrial disease treatment research efforts in progress, Dr. Robin Morris, head of Neuropsychology at Georgia State University and Dr. John Shoffner (Medical Neurogenetics, LLC) are investigating the relationship between mitochondrial disease and Autism Spectrum Disorders. Exciting leading-edge fMRI (Functional MRI) technology from the Georgia State/Georgia Tech Joint Center for Advanced Brain Imaging will be used in this study. The study is funded by the Department of Defense and U.S. Army Medical Research and Material Command (USAMRMC). In patients who have mitochondrial disease expressed as an Autistic Spectrum Disorder, this study will be very important to our understanding of whether identifiable differences exist between patients with ASD and mitochondrial disease and ASD without mitochondrial disease. This study will be essential to establishing parameters by which these patients could be followed during a treatment protocol.
In 2009, Dr. John Shoffner (Medical Neurogenetics, LLC) received FDA approval for an EID (Emergency Intervention Drug) to treat two patients with Leigh disease with a drug owned by Edison Pharmaceuticals called EPI-743. While initially promising, there has been no clear evidence that EPI-743 changed the natural course of these two patients with Leigh disease. Further investigations are underway with other pharmaceutical and biotech companies to explore drugs that may be effective in treating mitochondrial diseases. The investigations with EPI-743 represent important steps in the understanding of how to construct clinical trials for mitochondrial disease research. Mitochondrial diseases are diseases caused by mutations in a huge array of genes that impair cellular energetics by affecting a broad array of processes within cells. Understanding how to treat mitochondrial diseases requires an in depth understanding of mitochondrial diseases and rigorous scientific approaches to clinical trials design. The Foundation for Mitochondrial Medicine supports careful scientific investigations into mitochondrial disease treatment. Back to top
1-4pm Georgia Tech Hotel and Conference Center
Atlanta, Georgia
The Foundation for Mitochondrial Medicine offered its complimentary 2nd annual mini-symposium for patient families, medical professionals and caregivers of patients with mitochondrial disease and disorders. Presenters included:
Dr. John Shoffner, M.D. Medical Neurogenetics
Dr. Keith Hyland, PhD. Medical Neurogenetics
Dr. Robin Morris, Georgia State University, Department of Neuropsychology
Over 100 attendees, from across the nation, as far as Minnesota and Connecticut, came to learn more about mitochondrial disease research progress and treatment advancements. Topics included:
Participants particularly appreciated the straightforward, simplified approach to such a complex issue. Having the opportunity to interact with other families in similar situations along with being able to have one-on-one conversations with the doctors who gave their time on a Saturday afternoon was extremely valuable - 98% found it to be worth the time.
Several attendees commented, "Thank you to the Foundation for Mitochondrial Medicine for sponsoring this symposium. It was really informative and provided hope for the future. Now, we have a clear explanation of mitochondrial dysfunction."
For more information, contact info@foundmm.org. Back to top
Mitochondria are responsible for producing most of the energy the body uses for every day metabolic functions. More attention has recently been focused on a potential link between ASD and mitochondrial dysfunction [see 2008 Autism-Mitochondria Connection]. A study1 published in 2009 in the Journal of Child Neurology further examined this link, finding that a subgroup of patients with mitochondrial disorders may be at increased risk for autistic regression, especially around periods of fever. Finally, by showing that a subgroup of individuals with mitochondria disorders may be at risk for autistic regression, the publication highlights the continued need for enhanced awareness of the clinical signs of mitochondrial dysfunction.
Shoffner et al. Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression. J Child Neurol. 2009 Sep 22. [PubMed link: 19773461]
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Press Releases
ATLANTA - The Foundation for Mitochondrial Research, a US-based non-profit dedicated to funding research for the treatment of mitochondrial disease, has awarded a $50,000 grant to Professor Jan Smeitink of the Netherlands for his research involving the development of new small molecule compounds to treat mitochondrial dysfunction.
The aim of Smeitink's three-year research project is to develop a novel therapy for the treatment of mitochondrial diseases, specifically targeting Leigh's disease, MELAS, LHON and Friedrich ataxia. Research shows that mitochondrial dysfunction is a central element in Autism, Parkinson's, Alzheimer's, muscular dystrophy and Lou Gehrig's disease among others.
The funding by the Foundation for Mitochondrial Medicine will enable Smeitink and his research partners to use their specific and complementary expertise in developing new effective compounds to treat mitochondrial diseases. Recently, Khondrion, an offshoot company of the Radboud University Nijmegen Medical Centre (RUNMC) in The Netherlands, has identified several unique drug targets using its cell-based mitochondrial disease model developed in the past few years.
In preliminary experiments, Smeitink and his research team provided proof that intervention aimed at these targets can restore or prevent the negative consequences of mitochondrial dysfunction at a cellular level. In this current research project, Smeitink hopes to generate new compounds directed at these novel drug targets with high efficacy, bioavailability and stability, and few side-effects. He will also test new compounds for efficacy in unique cell-based and in vivo models for mitochondrial disease available at Khondrion and RUMCN. The best-performing new compounds will be characterized for exact mode of action. At the end of this project, Smeitink's research team plan to have new compounds available, for clinical testing. The research project will allow for further development of these compounds with a prospective pharmaceutical company. The Foundation's grant will enable Smeitink to synthesize and test about 5 to 10 additional compound modifications and thereby increases the number of potential new medications.
Smeitink's research has also been awarded a Eurostars grant. The Eurostars Program is a multi-country program dedicated to research and development. It is co-funded by European communities and 33 EUREKA countries. EUREKA is an intergovernmental network launched in 1985 to support market-oriented research and development and innovations projects.
Khondrion's (www.khondrion.com) mission is to make a substantial contribution to the development of a cure for mitochondrial disease. Next to its research and development, Khondrion offers second stage mitochondrial screening to facilitate small molecule and drug testing, including off-target effects.
The Foundation for Mitochondrial Medicine's mission is to support the development of the most promising research and treatments of the many forms of mitochondrial disease. In addition to the current grant, the Foundation funded an FDA-approved drug trial in 2010 and will fund participants in a functional MRI study at the Georgia State/Georgia Tech Center for Advanced Brain Imaging this year. For more information on the Foundation and information about funding of specific research projects, please visit www.foundmm.org or info@foundmm.org Back to top
November 12, 2011 -- The Foundation for Mitochondrial Medicine held its annual fundraiser, Hope Flies: Catch the Cure, on November 5 at the Terminus 200 building in Buckhead. Almost 400 guests enjoyed the event: a fun-filled philanthropic evening of culinary treats, cocktails and dancing to music from Band X, plus a live auction and raffles. According to Laura Stanley, executive director of the Foundation for Mitochondrial Medicine, the event raised $200,000 and all proceeds benefit the foundation and its mission to fund research for mitochondrial disease treatments. This year's event included a special appeal to fund additional patients for a functional MRI study underway at the Georgia Tech and Georgia State University joint Center for Advanced Brain Imaging.
"The continued support of the Foundation truly inspires our research and our patients" said Dr. John Shoffner, founding board member of The Foundation for Mitochondrial Medicine. "Awareness about mitochondrial disease is starting to grow as people begin to understand the importance of this work and how it can impact the patients affected by mitochondrial disorders."
"The complex mitochondrial disorders that impair the body's ability to adequately produce energy are also at the root of Parkinson's disease, autism, chronic fatigue syndrome, and many types of childhood developmental delays," continued Shoffner.
The Hope Flies: Catch the Cure event is the Foundation’s annual 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@foundmm.org. For more information on the Foundation, please visit www.foundmm.org Back to top
The inaugural ‘Hope Flies - Walk for Abby,’ held April 30, 2011 in Broad Brook, CT, honoring 3 year old Abby Sauerhoefer, diagnosed with mitochondrial disease 2 years ago, was a smashing success. In this community of just 10,000, over 500 participants came out to show their support parading through the town in a sea of blue. Their outpouring generosity has led to funds raised of over $40,000 to benefit research for mitochondrial disease treatments.
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Inaugural Event Raises More than $200,000 in the Quest for a Cure for Mitochondrial Disease
ATLANTA, GA – September 15, 2010, The Atlanta-based Foundation for Mitochondrial Medicine is pleased to announce the overwhelming success of its launch and initial fundraising efforts at its sold-out, inaugural event, Hope Flies: Catch the Cure, which was recently held on September 11. The more than $200,000 raised in proceeds from Hope Flies’ ticket sales, donations, auction and raffle will benefit the Foundation for Mitochondrial Medicine (FMM) and its mission to find treatments and ultimately a cure for mitochondrial disease. FMM is the first non-profit organization to financially support research that is directly applicable to mitochondrial disease treatment.
"We are thrilled by the unprecedented success of Hope Flies," says D. John Shoffner, M.D., founder of The Foundation for Mitochondrial Medicine. "This outpouring of support inspires our research and our patients. Awareness is the key. As people begin to understand the importance of this work to the lives of many patients affected by mitochondrial diseases, they will understand how these diseases touch their own lives through diseases like mitochondrial disease, Parkinson disease, Autism, chronic fatigue syndromes, and many types of childhood developmental delays. According to the Center for Disease Control, 17% of children have a developmental or behavioral disability such as Autism and intellectual disabilities (also known as mental retardation). Although difficult diseases, no one can do this alone - not the researchers and not the patients. Our group is dedicated to helping the children and adults with these diseases and are honored to have the support of so many."
The Foundation for Mitochondrial Medicine (FMM) is the Atlanta-based, non-profit organization solely dedicated to the cures for mitochondrial diseases. With support from prominent Board members, including Dr. John Shoffner, molecular neurogeneticist and internationally-renowned mitochondrial disease expert, and Mr. Frank Wren, General Manager for the Atlanta Braves, FMM is the first mitochondrial disease non-profit organization to financially support the first steps in the treatment of mitochondrial disorders with new drugs. FMM’s goal is to use the funds it raises to expand the accessibility of mitochondrial disease treatments in development and support clinical trials for treatment, thereby widening the reach to a greater number of patients at a more rapid pace. Learn more at www.foundmm.org.
Mitochondrial diseases are complex disorders that impair the body’s ability to adequately produce energy. This impairment of energy production can have significant adverse effects on the development and function of major systems like the heart, muscle, and brain. Today, 1 in 3-4,000 people are being diagnosed with mitochondrial diseases, and many more are likely affected. Research now shows significant links between mitochondrial diseases and a broad array of diseases that affect all ages, such as Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s (ALS) disease, muscular dystrophies, chronic fatigue syndrome and fibromyalgia syndromes. Clearly developing mitochondrial disease treatments will impact the treatment of many diseases that affect adults and children. Make your donations count. Support the treatment of many important diseases by supporting the development of mitochondrial disease treatments.
Click here for the press release. Back to top
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The Foundation for Mitochondrial Medicine has awarded Professor Jan Smeitink of Khondrion, (
In Tampa for only two screenings, June 10 and 11, the documentary film, Wretches and Jabberers, produced and directed by Academy Award-winning director Gerardine Wurzburg, is a poignant narrative that follows two men with autism, Tracy Thresher and Larry Bissonnette, who embark on a global quest to change attitudes about disability, intelligence and communication. Don’t miss this unique opportunity to see the film that is changing the face of Autism and disabilities!
BROAD BROOK, CT — The Sauerhoefer family is holding its inaugural family fun walk in honor of their daughter, Abby, age 3, who lives with a mitochondrial disease.
Hope Flies: Catch The Cure Celebrates Successful Launch for the Foundation for Mitochondrial Medicine
Over 500 guests attended Hope Flies and enjoyed a fabulous, fun-filled and philanthropic evening of cocktails and dancing, organized and chaired by Atlanta residents, Lane and Richard Courts and their volunteer host committee. The event was held in the Terminus 200 building in Buckhead in space generously donated by event sponsor Cousins Properties Incorporated and decorated by Kimberly Cary Event Design. The evening featured culinary delights by Endive, and guests danced the night away to the tunes of Atlanta’s own Yacht Rock Revue. Among the evening’s highlights was a live auction which featured fabulous lots, including a specially, signed Fender Stratocaster John Mayer guitar, signed Braves jerseys and unique, behind the scenes Braves experiences, an African safari trip, a private luncheon with best-selling author Emily Giffin, a luxury apartment stay in Paris and much more. Guests also had the chance to win a selection of incredible, themed raffle baskets with items of interest to all. |
The Foundation for Mitochondrial Medicine supports the development of the most promising research and treatments of the many forms of mitochondrial disease. Privacy Policy © 2012 Foundation for Mitochondrial Medicine |
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