More than $1 million to be awarded June 25, 2008 at Indianapolis symposium

The United Mitochondrial Disease Foundation (UMDF) awarded $1,025,080 to ten researchers whose projects may lead to a cure or better treatments for the thousands of adults and children who are born with and suffer from a mitochondrial disease.     The awards, which were handed out at the UMDF’s annual symposium “INDY 2008 - Setting the Pace in Mitochondrial Medicine”, bring the total of research awards given by the UMDF to over $6 million since 1996.  The UMDF is the largest, non-governmental contributor of grants focused on mitochondrial disease research.

Each year between 1,000 and 4,000 children in the U.S. are born with a mitochondrial disease and suffer from severe and devastating symptoms for which there is no cure and no effective treatment. Mitochondrial diseases develop when the mitochondria – the body’s main energy source– do not function properly or are mutated. Mitochondria produce energy from food and oxygen.  Because mitochondria are in almost all human cells, mutations that result in disease potentially can affect every body tissue.  The mix of normal versus defective mitochondria can vary within the body’s different tissues which can result in some organs of the body being healthier than others.  Therefore, the severity of symptoms and how the disease manifests itself can vary from case to case. One person may suffer difficulty breathing and/or digestive problems, while another may not be able to walk, talk, see or hear.  Some children may not be able to hold their mother’s hand.

The research grants were awarded during a banquet to congratulate the recipients on Friday, June 25, 2008 at the Hyatt Regency Hotel in Indianapolis, Indiana. 

Below is a summary of the recipients, a brief description of the project, and award amount.

Stuart Smith, Ph.D., D.Sc., Children’s Hospital & Research Center at Oakland
“Utilization of knockout mouse models to elucidate the importance of the de novo mitochondrial fatty acid synthesis pathway in mitochondrial function.”
Grant Award $126,563
He will develop an animal model to investigate mitochondrial synthesis of fatty acids. This is important because fatty acids are crucial structural components of mitochondria and defects in their synthesis could be linked to specific mitochondrial diseases.

Bridget Elizabeth Bax, Ph.D., St. George’s University of London
“Evaluation of the efficacy and safety of erythrocyte encapsulated thymidine phosphorylase therapy in two patients with mitochondrial neurogastrointestinal encephalomyopathy.”
Grant Award $116,428
She will investigate the effectiveness of providing red blood cells that supply a missing enzyme to patients with a severe form of mitochondrial disease. This is significant because there is currently no means of ridding patients of toxic metabolites that accumulate because of the absence of this enzyme.

Beverly A. Rzigalinski, Ph.D., Virginia College of Osteopathic Medicine
“Cerium oxide nanoparticles in the treatment of mitochondrial diseases.”
Grant Award $100,469
Mitochondrial enzymes can be damaged by the buildup of reactive oxygen species such as free radicals. Her research will investigate the potential for a new free-radical scavenging therapy to reduce oxidative stress on mitochondria.

Brendan James Battersby, Ph.D., University of Helsinki
“Identifying genetic modifiers of tissue-specific mitochondrial DNA segregation.”
Grant Award $100,000
His project will identify factors that regulate the expression of mitochondrial DNA, especially mutated DNA that leads to impaired ATP synthesis. This will provide fundamental information about the genetics of mitochondrial disease.

Deepa Vinay Dabir, Ph.D., University of California-Los Angeles:
“Study of redox regulated pathways in the mitochondrion.”
Grant Award $100,000
She will study the movement of proteins into mitochondria by investigating and describing a recently discovered import pathway. The importance of this research is two-fold in that it will provide fundamental insights into mitochondrial biogenesis and could also lead to the use of this pathway for introduction of therapeutic agents into mitochondria.

Rebeca Acin-Perez, Ph.D., Weill Medical College, Cornell University
“OXPHOS modulation by mitochondrial protein phosphorylation in mtDNA mutant cells.”
Grant Award $99,990
Cells with mutated mitochondrial DNA have a diminished ability to produce ATP. Her research project will investigate how these mutations affect the proteins that regulate ATP synthesis. This is significant because it may lead to new drug therapies.

Timothy E. Shutt, Ph.D., Yale University School of Medicine:
“Selective alteration of mitochondrial gene expression via modulation of the dual-function h-mtTFB1 and B2 factors as a potential therapy for mitochondrial diseases.”
Grant Award $99,998 
He will assess the effectiveness of increasing the activity of regulatory factors that would promote synthesis by mitochondria of proteins vital to their function. This is important because it may point to new therapies for enhancing mitochondrial energy metabolism.

Sion L. Williams, Ph.D., University of Miami
“Evaluation of novel zinc finger nucleases as a means to target m.3243 A>G in vivo.”
Grant Award $99,998
He will investigate the effectiveness of enzymes that selectively deactivate mutant DNA in mitochondria. This is important because decreasing the level of abnormal mitochondrial DNA in targeted tissues could significantly diminish the symptoms experienced by mitochondrial disease patients.

Elizabeth Anne Amiott, Ph.D., University of Utah
“Mitochondrial Fusion Defects in Neurological Disease.”
Grant Award  $98,300
Her project will investigate the relationship between mitochondria losing their ability to fuse with each other and the development of defective nerve function. This is significant because some severe neurological diseases may be helped by treatments that enhance mitochondrial fusion.

Leo Joseph Pallanck, Ph.D., University of Washington
“The role of the PINK1/Parkin pathway in mitochondrial integrity.”
Grant Award $83,344
He will investigate the regulation of splitting and combining of mitochondria in cells. This is important because specific diseases are linked to defects in mitochondrial processing, especially an inability to eliminate abnormal mitochondria.

 The awards were presented at the UMDF’s annual Symposium, June 27, 2008 in Indianapolis, Indiana.

 Davis died earlier this year after dedicating himself to the success of the UMDF.    After learning that his grand daughter was diagnosed with a mitochondrial disease, the Beachwood, Oh., resident enlisted the help of his family in sponsoring the largest and most successful golf outing supporting the UMDF mission.   Mr. Davis accepted a seat on the UMDF Board of Trustees, serving as treasurer, vice chairman and in 2007, he was elected Chairman. During his tenure, the UMDF saw its chapters and groups increase to 60 nationwide and membership increase by 25%.

 Swinn is the outgoing president of the UMDF Atlanta Chapter and will continue to serve as the Chapter Liaison to the UMDF Board of Trustees.     Swinn, a native of Southampton, England, is the owner and general manager of the Peachtree Club in Atlanta, Ga.   He and his wife, Mary, have two daughters, Emily, 12 and Rachel, who is 10.

 Swinn was surprised when he was presented the leadership award by his daughter, Emily.   She announced her father was the winner after she received the UMDF’s 2008  “Heartstrings Award.”   The Heartstrings Award is given to an individual under the age of 18 who has invested their time, demonstrated their talents, effectiveness and generosity in raising money or donations to enable the UMDF to continue its mission. 

 Emily was diagnosed with a mitochondrial disease when she was five. Working with the Atlanta Chapter, Emily has volunteered, participated, and served as a spokesperson for numerous events in Atlanta. Emily also helps keep the Atlanta Chapter moving by assisting with mailings and meeting set up.

The third national award handed out was the “LEAP Award”. LEAP, which stands for Living, Encouraging, Achieving and Persisting, was designed to recognize and individual, 14 years or older, living positively with a mitochondrial disease. The award highlights the recipient’s  accomplishments and volunteer service. The 2008 winner of the LEAP award is Therese Garvin, who is the Delaware Valley Chapter President.   

 Garvin lives in Philadelphia, Pa.,  and is the mother of three children.   An affected adult, her diagnosis came five years after symptoms that included seizures, fainting spells, digestive problems, night sweats, stroke-like episodes and fatigue and weakness that required her to use a walker and wheelchair.   Although she continues to struggle, she is now able to walk without assistance.

 The award ceremony wrapped up “INDY 2008- Setting the Pace in Mitochondrial Medicine”.  The four day symposium brought together the world’s top medical experts in the field of mitochondrial medicine and affected individuals and their families to learn about the latest advances.  It was at the symposium that more than $1 million was awarded in research grants to recipients for projects aimed at finding a cure. The amount brings to $6 million in research grants awarded by the UMDF since 1996 making it the largest, non-governmental contributor to research into primary mitochondrial diseases.

The United Mitochondrial Disease Foundation announces a workshop that will convene in Indianapolis to discuss the potential relationship between mitochondrial diseases and autism spectrum disorders.  The workshop, entitled “Mitochondrial Disorders of Childhood: Testing, Potential Relationships to Autism Spectrum Disorders, and Triggers for Neurological Deterioration,” is being sponsored by the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Mental Health (NIMH), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the Department of Health and Human Services (DHHS).  Representatives from the UMDF and its Scientific and Medical Advisory Board will participate in the discussion.

The workshop is scheduled for Sunday, June 29, 2008 at the Hyatt Regency Hotel in Indianapolis, following the UMDF’s Symposium, “Indy 2008: Setting the Pace in Mitochondrial Medicine.” 

According to the organizers, this workshop will convene 11 experts in mitochondrial disorders or autism to discuss how the neurology of mitochondrial disorders might inform autism research.  In particular, the workshop will address the implications for autism research of topics such as neurological features of mitochondrial disorders, current understanding of their exacerbating factors, and challenges in testing and diagnosis.

Representing the mitochondrial disease communities at the workshop through their affiliation with the UMDF are:

Charles A. Mohan, Jr., Executive Director and CEO of the United Mitochondrial Disease Foundation, Howard Zucker, M.D., J.D., UMDF Trustee,  Salvatore DiMauro, M.D.,  Columbia University and Chairman of  the UMDF’s Scientific and Medical Advisory Board (SMAB). Also representing the SMAB are Bruce Cohen, M.D., Cleveland Clinic, Vamsi Mootha, M.D., Massachusetts General Hospital, Doug Wallace, PhD., University of California, Irvine.   Also attending are past SMAB members Robert K. Naviaux, M.D. PhD., and  Richard Haas, M.D., both from University of California – San Diego School of Medicine and Tanja Taivassalo, PhD. who is a previous recipient of the UMDF research grant.  

Observers are welcome as seating allows, and registration is required. Please contact Ms. Sylvia Parsons at parsonss@ninds.nih.gov  for registration and additional information.

The attention of most school students at this time of the year turns away from classrooms and books to summer fun and vacations.  But, for nine classmates who attend Sacred Heart Academy in Hamden, Connecticut, summer will include a trip to Indianapolis, Indiana where they will have an opportunity to present their scientific study in poster form before the world’s top medical experts in mitochondrial medicine.

The United Mitochondrial Disease Foundation (UMDF), a Pittsburgh based organization that promotes research and education for the treatment and cure or mitochondrial diseases, will bring together hundreds of physicians, researchers and clinicians for its annual symposium “INDY 2008- Setting the Pace in Mitochondrial Medicine”.   The scientific portion of the four day event begins on June  25, 2008 at the Hyatt Regency in Indianapolis.    During the symposium, scientists are invited to present their research findings to the various medical and research professionals who will be in attendance.

“Every year, my honors level Biotechnology Research Project class decides on a study and must complete it before the end of the year and they present a poster at a scientific meeting,” said Sr. Mary Jane Paolella.   Her students had just finished a  3-year study on osteoporosis in which the girls sequenced 5 of the genes most implicated in the disease using bovine DNA.   The girls attended the International Symposium on Osteoporosis last April and presented their work to the clinicians and researchers there. 

After the students completed that study, Sr. Mary Jane was approached by a scientist at the University of New Haven  who asked if they  were interested in studying the horseshoe crab of Long Island Sound due to the of its medicinal value of the species.   “ The blue blood of the horseshoe crab is very costly because it contains a protein which is used to test for bacterial endotoxins which is the only test for spinal meningitis, among other diseases.  The crab is an endangered species on Long Island Sound and one needs a license to draw its blood.  So, the girls became interested.”

Sr. Mary Jane reports that the students found that the mitochondrial DNA of the crab contains a gene  that might show some variation: the cytochrome oxidase gene (COX1 or CO1).  A  mutation of this gene in humans causes tumor formation, particularly breast, colon, and prostate tumors.    The students began a  project to see of they could find any variation in the COX gene of the horseshoe crab while at the same time, trying to see if those variations are related to SNPs (single nucleotide polymorphisms) in the human mtDNA COX gene. 

The students who conducted the study are:  Francesca A. Carlisle, Meghan C. Crosby, Nicole A. DeLauro, Kelley E. Durham, Alessandra Fiallos, Elena E. Jackson, Erin M. Laskowski, Jennifer A. Limauro, Andrea L. Wagner.   “While they were immersed in their studies, the girls were looking for a scientific meeting in which they would be allowed to present and they asked the UMDF”, Sr. Mary Jane added. 

For the UMDF, this was a first.  The organization has never been approach by high school students with a desire to exhibit.  “ Our symposium course chairs, who represent the very best in mitochondrial disease medicine, reviewed the abstract from Sacred Heart Academy.  Needless to say, they were very impressed with the project and were excited to hear the students were planning to present their poster in Indianapolis,” said Chuck Mohan, Executive Director and CEO of the UMDF. 

“We must encourage young people in these types of scientific efforts.  One of these students may come away from this conference with a desire to study mitochondrial medicine and, hopefully in our future, discover a cure to this debilitating disease”.

Mitochondrial Awareness Week passed April 1, 2008.  As this is a concurrent resolution of the General Assembly, it was adopted by one reading in both chambers.  It carries no force of law, and, therefore, does not require ratification by the General Assembly nor is it sent to the Governor for signature. This resolution actually became effective on April 1, 2008 when the House concurred in it.  Concurrent resolutions are usually used for congratulations and in this case for recognition of certain things like Mitochondrial Disease Awareness Week.

S*1138 Concurrent Resolution, By Peeler and Ritchie
 A CONCURRENT RESOLUTION DESIGNATING THE THIRD FULL WEEK OF SEPTEMBER IN EACH
 YEAR AS "MITOCHONDRIAL DISEASE AWARENESS WEEK".

   02/20/08  Senate Introduced SJ-11
   02/20/08  Senate Referred to Committee on Medical Affairs SJ-11
   03/12/08  Senate Committee report: Favorable Medical Affairs SJ-14
   03/13/08  Senate Adopted, sent to House SJ-20
   03/25/08  House  Introduced HJ-34
   03/25/08  House  Referred to Committee on Invitations and Memorial
                     Resolutions HJ-34
   03/27/08  House  Committee report: Favorable Invitations and
                     Memorial Resolutions HJ-2
   04/01/08  House  Adopted, returned to Senate with concurrence HJ-35

A CONCURRENT RESOLUTION
DESIGNATING THE THIRD FULL WEEK OF SEPTEMBER IN EACH YEAR AS "MITOCHONDRIAL DISEASE AWARENESS WEEK".

Whereas, mitochondria are the power plants in every cell of a person's body and create more than ninety percent of the energy needed by the body to sustain life and support growth; and

Whereas, mitochondria may not function correctly due to genetic defects, damage caused by drugs, or damage caused by destructive molecules called free radicals; and

Whereas, when mitochondria fail, cell injury and cell death follow, and if the process is repeated throughout the body, whole systems begin to fail; and

Whereas, mitochondrial diseases can cause isolated symptoms like seizures, low blood counts, blindness, deafness, dementia, heart failure, and progressive muscle weakness, but more often they cause failure of several organ systems in sequence; and

Whereas, mitochondrial diseases can affect any person at any age; and

Whereas, it is estimated that more than one in four thousand children born in the United States each year will develop a mitochondrial disease by ten years of age; and

Whereas, since mitochondrial disorders mimic other diseases, it is believed that they are under diagnosed; and

Whereas, currently no cures or effective therapies exist, but early diagnosis can help patients and their families use proper medication and nutritional supplements to improve the quality of life, and even prolong life; and

Whereas, it is appropriate that all citizens of the State of South Carolina be better informed about mitochondrial diseases and their impact. Now, therefore,

Be it resolved by the Senate, the House of Representatives concurring:

That the members of the South Carolina General Assembly, by this resolution, do designate the third full week of September in each year as "Mitochondrial Disease Awareness Week" in the State of South Carolina, and the citizens of South Carolina are urged to observe the week with appropriate activities and programs.

Thank you to the volunteers in South Carolina for your hard work!!

The Massachusetts State Legislature has approved a measure that proclaims the third full week in September as “Mitochondrial Disease Awareness Week”.   The measure now moves to the Governor’s desk for approval. 

Supporters explained that mitochondria are the power plants in every cell of a person’s body and create more than 90 percent of the energy needed by the body to sustain life and support growth. They note that when a body's mitochondria fail, the resulting problems often lead to death. They said that making the public aware of this disease would save lives.

Click here to learn more about  "Mitochondrial Disease Awareness Week" and how to go about having a proclamation approved in your state!

Brandon Leach of Chevy Chase, MD got the chance of a lifetime and took part in the "Pilot for a day" program at Andrews Air Force Base.  Below are photos from his experience, along with a news release and online video from 9NEWS NOW.

News story written by Scott Rubens at 9NEWS NOW - Online Video
ANDREWS AIR FORCE BASE WUSA The biggest air show in our area is officially underway. The annual Joint Service Open House runs through Sunday at Andrews Air Force Base. Friday was a preview day for United States servicemen, women, and their families.

Among the guests was five year old Brandon Leach of Chevy Chase.

It was a remarkable day for Brandon because his own future is in question. He suffers from a life threatening genetic disorder called mitochondrial disease. The affliction starves energy from his vital organs.

Despite his disease, Brandon loves all things military and has kept busy raising money with a lemonade stand to send comfort supplies to our troops overseas.

The United States military returned the favor on Friday and made Brandon's fondest dreams come true by letting him be a junior pilot for the day.

His father Rich says, "We have no idea what the future will bring...we live each day as a very special occasion."

Friday was indeed a memorable time for Brandon as he was allowed to climb through Air Force Jets and a Coast Guard Rescue Helicopter.

Tye Conklin, a rescue swimmer says, "This is more fun than rescuing people...little kids that shake your hand and give you a hug...it's the best part of the job."

At this time, there is no cure for this disease and Brandon's parents desperately want to save his life by helping to promote research into this deadly disease.

Joey  Paulin, who lives in Alabaster Alabama and whose family are members of the UMDF.  Joey has received a unique honor from his hometown fire company – he has become their youngest member!
You can read the story and watch the video here.   
On Monday, May 5, 2008, The City of Alabaster is going to honor Joey by naming a day after him. The Mayor of Alabaster  is going to declare April 12 of each year as "Joey Paulin Day" in the City of Alabaster. April 12 is Joey's birthday.
 Click here for a news video from the ceremony!

Federal authorities for the first time conceded that there is a connection between a child’s autistic symptoms and the vaccines she received as an infant.  Medical evaluators at the Department of Health and Human Services concluded that the child had been injured by the vaccines and recommended that her family be compensated for the injuries.   The panel stated that the child had an underlying mitochondrial disease that was aggravated by the vaccines, causing the autistic like symptoms.

Additional Helpful Links:
Symptoms of Mitochondrial Disease
eMedicine - Autistic Spectrum Disorders

Links to Related Media:
Chuck Mohan Interview on NPR Morning Edition on 03/07/08  ( click on ‘Listen Now’)
Baltimore Sun Article
Associated Press
Web MD
Atlanta Journal Constitution
The Sentinel – Carlisle, Pennsylvania
TIME - Case Study: Autism and Vaccines

Released on April 11, 2008:

The United Mitochondrial Disease Foundation released the following statement from its executive director and CEO, Chuck Mohan, in light of the National Vaccine Advisory Committee’s (NVAC) meeting of its Vaccine Safety Working Group and recent published reports of possible links between mitochondrial disorders and autism.

“Recent published reports about the potential links between mitochondrial disorders and autism demonstrate the urgent need for more research into mitochondrial disease, a devastating and often fatal illness.

“Mitochondrial dysfunction has also been implicated in Alzheimer’s Dementia, Parkinson’s disease, Huntington’s disease, heart disease and diabetes.

“Mitochondrial disease is not rare. Researchers estimate that every 15 minutes a child is born with mitochondrial disease or will be diagnosed with mitochondrial disease by the age of 10. Most affected children do not live beyond their teenage years.

“The National Institutes of Health currently spends about $11.8 million on research into mitochondrial-related research – with only about one third of that earmarked for primary mitochondrial disease research. That is less than 1/1000 of one percent of NIH’s $29B annual budget. That is why the United Mitochondrial Disease Foundation supports the effort by the National Institutes of Health to place mitochondrial disease research on an NIH roadmap.

“Mitochondrial disease deprives the body of energy making it difficult to function properly. It can affect any organ of the body and at any age. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow the body to walk or write, the heart may be weakened, and the ability to eat and digest food can be compromised.

“Finding the cause of and cure for mitochondrial disease would not only alleviate the suffering of families around the world, it would also unlock the door to a world of scientific knowledge and could help lead the way to possible treatments for many other diseases.”

“I am so excited!!” That was the reaction of Leslie Reynolds of Atlanta when she was the first to see a newly commissioned plate that honors the life of her daughter, Morgan. Morgan bravely battled mitochondrial disease. She passed away in December of 2006. Morgan was 2 and half years old. Artwork for the plate, which features a “Lady Bug”, was designed by Tristan Bramblett , of Clemmons, North Carolina. Tristan is a six year old who is diagnosed with Autism. Tristan’s artistic designs are featured on various products sold by Blue Elephant Creations.

                                                          
                                                                          Morgan Reynolds

Called “Ladybug Morgan”, the plate was unveiled to the public Saturday, March 8, 2008 at “Mito Madness”  held at the Peachtree Club in Atlanta. The event was designed as a fundraiser for the UMDF. Reynolds and her husband Bernard, are co-chairs of the event.

The plate, is one in a series entitled ‘Plates with Purpose^TM’. Reynolds became aware of the plates after seeing them in Waldenour, an Atlanta store that is owned by her friend Karen Raymer. She says that Raymer contacted ‘Plates with Purpose^TM’ and told them about Morgan’s story. Plates with Purpose^TM are handcrafted in Western Pennsylvania. Typically, Plates with Purpose^TM proceeds are only donated to Pittsburgh area charities. “When we heard about Morgan’s story and when we found out that the UMDF was based in our home city, we knew we had to move forward with production”, said Mary Irwin-Scott, President of Riverside Designs and Plates with Purpose^TM. The plate is going to be offered in clear and red.
                
                                                                       

The Ladybug Plate, as well as all of their designs is hand cut, colored, bent and shaped to create an original design.  The plate is available for purchase at www.plateswithpurpose.com, 15% of the proceeds will be donated back to the UMDF.

Related news articles:
Pittsburgh Tribue Review
Atlanta Journal (pdf)

The UMDF DC Metro group (Maryland, Virginia and the District of Columbia) is just starting to come together and is in the process of launching a cookbook fundraiser that will be available for sale this summer.  The cookbook project team will finalize an online cookbook recipe submission form where you will be able to submit some of your favorite family recipes.  For more information, contact any of these team members: Harriet Ulrich, Margaret DeLacy, Shannon DeLacy or Anne Tuccillo.

For instructions for soliciting and submitting recipes, Click Here.  To submit a recipe, Click Here.

The United Mitochondrial Disease Foundation Board of Trustees has announced the following appointments to the board.

Howard Zucker, MD, JD
Dr. Zucker received a B.S. degree from McGill University and his M.D. from George Washington University School of Medicine at the age of 22.  He trained in pediatrics at Johns Hopkins Hospital, anesthesiology at the Hospital of the University of Pennsylvania, pediatric critical care medicine and pediatric anesthesiology at The Children's Hospital of Philadelphia, and pediatric cardiology at Children's Hospital Boston / Harvard Medical School.  He was an Assistant Professor at Yale University School of Medicine, Director of the Pediatric Intensive Care Unit and Associate Professor at Columbia University College of Physicians and Surgeons, Adjunct Associate Professor at Cornell University Medical School, research affiliate at the Center for Space Research at M.I.T. and on the faculty at the National Institutes of Health. Dr. Zucker was involved with designing experiments that flew onboard the Space Shuttle Spacelab missions.  He received his J.D. from Fordham University School of Law and his Masters in Law from Columbia Law School where he was a James Kent Scholar. Dr Zucker has served as a White House Fellow and Special Assistant to the Secretary of Health & Human Services and was Deputy Assistant Secretary of Health at the U.S. Department of Health and Human Services. He is board certified in multiple specialties / subspecialties and completed the National Preparedness Leadership Initiative Executive Education program at the Kennedy School of Government / Harvard School of Public Health. Most recently Dr. Zucker was the Assistant Director-General: Health Technology and Pharmaceuticals, at the World Health Organization and Representative of the Director-General for Intellectual Property, Innovation, and Public Health also at the World Health Organization. Dr. Zucker is a member of the Council on Foreign Relations, Council for Emerging National Security Affairs, was a public health "hi-level expert" for NATO and is listed in Best Doctors in America and Who's Who in the World.
                                          
Rob Platt
Rob has been involved with the UMDF since his daughter,Carly, 13, was diagnosed in 1999 with a mitochondrial disease.  Rob, his wife Jill and the couple’s other daughter, Katie, 10, are all actively involved in the efforts to help find a cure, raise funds and create awareness about mitochondrial disease and the UMDF.  Rob was involved in the early stages of the Cleveland Walk-A-Thon and the family golf outing created by his father-in-law, Stan Davis, and Jill Platt.  This year, the golf outing will become the Stan Davis Memorial Golf Outing with all the proceeds for years to come to go to the  UMDF.  Rob is a graduate of Ohio State University.  He is the sole Owner and President of Branding Solutions, Inc., an advertising specialty and apparel company located in Cleveland, Ohio.  Rob has been active over the years in several not-for-profit organizations helping raise awareness and generate much needed funds on a local and national level.  Because of his new position with the board of trustees, the UMDF will secure a new merchandise and fulfillment organization.

Super Tuesday may mean a huge political prize for those running for the white house, but Tuesday, February 5, 2008 was definitely super for national awareness about mitochondrial disease.

It all began when ABC News phoned the UMDF office to ask if we had heard about a report on the BBC. BBC was reporting that researchers at Newcastle University in northern England created a human embryo with three parents using DNA from one man and two women.   The idea of the research was to prevent women with faults in their mitochondrial DNA from passing mitochondrial disease to their children.   ABC asked the UMDF to help them “put a face on mitochondrial disease” for their report on the research. So we led them to Michelle Christenson,  who is a UMDF member and the mother of 9 year old Isabelle, who is an affected child. Isabelle has already suffered a stroke and undergone a kidney transplant, a stomach transplant and a liver transplant.  The Christenson family lives in the Pittsburgh area.

Michelle graciously agreed to allow the ABC news crew into her home and agreed to be interviewed for World News with Charles Gibson. “Isabelle has about a year to live, the doctors told us about a week and a half ago, barring no more complications," Michelle told the reporter.  

Patrick Chinnery, PhD., was also interviewed for the report, as he was part of the team conducting the experiment. Dr. Chinnery is a UMDF grant recipient for work not related to the project that was the subject of the ABC News report. The UMDF funded Dr. Chinnery for a 2005 project on the prevalence of mitochondrial mutations. It is suspected that mtDNA mutations are more common than is currently understood. Dr. Chinnery’s study will lay the groundwork for developing a more accurate assessment on their incidence in the population at large.

Later in the evening, viewers watching TLC were able to see E.J. Fogel explain about mitochondrial disease and the effects it has had on his daughter Taryn on the TV show LA Ink. E.J taped the show late last year. He had a tattoo of Taryn inked on his upper arm.    E.J. and his wife Debbie are Mito Ambassadors in Southern California and live in Corona, Ca.

E. J told us that he wanted to get a tattoo of Taryn, but being on LA Ink served a dual purpose. “ The cost of the tattoo would be similar in a non-TV setting. To get accepted on the show meant that I would get the tattoo that I wanted and be able to further our mission as ambassadors to get the word out about mitochondrial disease to audience of millions in one shot”, he said.

Above is a photo of EJ and Taryn showing off EJ’s new tattoo of Taryn and below is a picture of Taryn with the LA Ink Crew.   In case you missed the show, it will repeat on Tuesday, February 26, 2008 at 9 pm Eastern and again on Wednesday, February 27 at midnight Eastern. Check your local cable listings for a time in your area. 

The United Mitochondrial Disease Foundation lost one of its champions.   Stanley Davis, who served as the Chairman of the UMDF Board of Trustee’s died on Saturday, January 19, 2008 at his home in Cleveland, Ohio. He was 66.   Mr. Davis was buried on Monday, January 21, 2008.
“As Chairman of the Board, Stan was the driving force in moving the UMDF forward in many areas”, said Charles A. Mohan, Jr., Executive Director and CEO of the UMDF. 
 “Stan’s legacy with UMDF will continue to live on because many of the initiatives started during his chairmanship will continue to benefit the UMDF and our members in the years ahead”.  
Mr. Davis was a member of the UMDF board since 2001. He was previously Chairman of the UMDF Finance Committee.  In his professional life, Mr. Davis was Vice President and a partner of Shaker Auto Lease in Shaker Heights, Ohio, and was in the leasing business since 1963. 
Mr. Davis is survived by his loving wife, Carole, his children, Todd (Lisa) Davis, Jill (Robert) Platt and Brian (Stacey) Davis.   Mr. Davis was also the devoted grandfather of Jordan, Dakota, Carly, Katie, Griffin and Mackancie.   He was also the brother of Dee (Robert) Herman. 
Friends who wish may contribute in memory of Stanley Davis to the United Mitochondrial Disease Foundation, 8085 Saltsburg Road, Suite 201, Pittsburgh, PA 15239.

Mr. Wright is the CEO of WDW Management Services and is a Certified Public Accountant who is retired from the Meat Industry. He is currently managing investments for the Wright Family Office. Mr. Wright and his wife Pat have a daughter, Kelsey, who is 26 years old and a graduate of Midwestern University located in Wichita Falls, Texas.   Kelsey has been affected with a mitochondrial DNA disorder for the past 23 years. The couple also have a son, Austen.

Ms. Shaw has been  a member of the Board of Trustees since 2003. She served as secretary over the past year.  Ms. Shaw also chairs the Adult Advisory Council Team.  Prior to that, she served as Chapter Liaison, and was past president of the UMDF Southern California Chapter.  Her expertise is in meeting planning, special events, conference coordination and marketing. Ms. Shaw was diagnosed with mitochondrial disease in 1999 and now resides in Carefree, Arizona.

Mr. Kubach also has been a member of the board since 2003. He will serve another term as Treasurer. The Philadelphia area resident was the owner/proprietor of the Melrose Diner and owner/operator of The Best Western Inn at King of Prussia. He has worked in all phases of the restaurant and hotel business.  Mr. Kubach has also worked as Project Manager in Research and Standards for ARA Services, Inc.  He has served on the boards of local, state, and national restaurant associations

Mr. Lyman is the father of Caroline Elizabeth Lyman who is severely affected with a mitochondrial disease. Presently the chairperson of the UMDF IT Committee, Mr. Lyman and his wife, Jennifer, have been actively involved with UMDF since 1998. Jennifer is the past President of the Ohio chapter of UMDF and together they have worked on many successful committees and projects for the benefit of UMDF.  Included in the chapters accomplishments is fundraising efforts totaling in excess of $500,000, awareness increase campaigns for both the general public and the medical community and support programming for affected individuals and family members.  Mr. Lyman is the President of Compass Solutions, a company he founded, which designs and implements telecommunication and internet solutions for businesses.  The Lyman’s also have another daughter, Abigail who is unaffected by mitochondrial disease.  The family lives in Northeast Ohio.

The nominating committee also recommended John A. Dicecco to the UMDF Board of Trustees.

The board received the nomination of John A. DiCecco of Columbus, Ohio. Mr. DiCecco served on the board from 1998 until 2007. Previously, Mr. DiCecco was Board Treasurer. He was instrumental in developing UMDF financial policies and systems.  He also served as Vice Chairman of the UMDF Board of Trustees.   Mr. DiCecco is Vice President of Retail Ventures of Columbus, Ohio.   Previously, he was Senior Vice President of General Nutrition.