ARE YOU HAVING A GOOD DAY? MitoAction Progress Report 2009

Transcription

1 ARE YOU HAVING A GOOD DAY? MitoAction Progress Report 2009

2 IT S HAVING THE ENERGY TO GET OUT OF BED, TO MAKE IT THROUGH A WORK DAY, AND TO RAISE A HAND IN CLASS. FOR THE MILLIONS SUFFERING WITH MITOCHONDRIAL DISEASE, A GOOD DAY MEANS SOMETHING ELSE.

3 GOOD DAY BAD DAY Gwen Waiting for the Gift of Life Complex I, II, III, IV More than half of Gwen s mornings over the past 3 years have been spent in a hospital room. Gwen s organs have been ravaged by mitochondrial disease. For 6 years she has been dependent on IV nutrition 24 hours a day. Her life is filled with tubes and pumps, IV medications, life-threatening blood infections and restrictions. But if you were to meet her on the street you would never know of the dozens of surgeries or that Gwen is currently waiting on the organ transplant list for the gift of life, a multi-organ transplant that will replace most of her abdominal organs and give Gwen a future. Jack Their Shining Light Complex I & III Jack is a bright, handsome, funny, silly, amazing boy who has touched many lives. Jack had a feeding tube surgically placed in his stomach when he was three due to his many digestive problems. He receives multiple medications every day through this tube as well as supplemental nutrition. He tires rapidly, which has forced him to miss over 25% of school days this year. If Jack gets a simple cold, he can t fight it off as easily as other children, and he will likely be sick for a long time. Life is far different for Jack and his family than others around him, yet he is the light of their life.

4 WHILE FINDING A CURE IS A LONG TERM GOAL, WE CAN T SPEND A LIFETIME WAITING FOR IT. FOR THOSE SUFFERING, WE MUST TAKE ACTION AND WE NEED YOUR HELP. WELCOME TO MITOACTION. Theresa Dreams and Desires mtdna mutation Theresa used to help save lives as an intensive care nurse, now she is the one who needs lots of care. She used to administer intravenous fluids to patients, now she has to give them to herself to keep her blood pressure and heart rate stable. I used to have an incredible reserve of energy, enough to take care of my children, my home, and go to nursing school all at the same time. Now, if I am going to take a shower or sweep the floor I need to space it out so I have enough stamina to stay medically stable. My dreams and desires are so much more than my body will allow. Brianna A Drive for Life mtdna mutation Brianna, a beautiful talented 18 year old college bound senior, has fought her whole life against this invisible foe, mitochondrial disease. She shows tremendous courage against the onslaught of severe cardiac symptoms, while she continues to fight for a normal life. Her symptoms were so severe at birth that she was born, her parents were told she wouldn t survive to be a year old. Yet Brianna has a drive for life. I hope everyday that science will find the answers and cures to my disease, but I am alive today, and that is all I may have, so today I will find a way to live it to the best of my ability.

5 What is Mito? Mitochondrial disease (Mito) is a genetic, neurodegenerative disease that occurs in infants, children, teens, and adults of all races and gender. Mito occurs in about 1 in 4,000 individuals in the United States, similar to the frequency of cystic fibrosis. Many clinicians and researchers believe that Mito is seriously under recognized and often misdiagnosed. Mitochondrial dysfunction has also been implicated in autism, type II diabetes, Parkinson s disease, and Alzheimer s disease. Imagine a cell phone without enough battery charge Mitochondria are the powerhouse of the cell, providing energy to the body to live. Mito is progressive, meaning that symptoms worsen over time. Two hallmark characteristics of Mito are multiple organ involvement and symptoms that are seemingly unrelated. Mito results of faulty energy metabolism, and often manifests with a variety of symptoms including: stroke, muscle pain, extreme fatigue, gastrointestinal dysmotility and organ failure. Diagnosis & treatment are challenging There is no single laboratory or diagnostic test that confirms a diagnosis of Mito. Blood DNA and/or muscle biopsies are the best means of diagnosing patients. There are no cures for Mito. Treatment options are limited and include vitamin supplementation and energy management strategies as well as nutrition and hydration. In some cases, supportive care can help to reduce symptoms or delay or prevent the progression of the disease. Accomplishments by MitoAction.org / MITO-411, a toll-free peer support program / When Jeremy Jones, Stomach Stopped Working, an illustrated children s book about g-tubes / Symptom Guide for Clinicians / Ongoing international awareness initiatives / Energy 4 Education: Multimedia DVD and resources / Monthly international teleconference series / Free membership, outreach and support for all Mito patients / Virtual and teleconference support / Annual community support activities including the Boston Mito Walk / MitoAction video, audio and podcast collection / Student MVP visiting patient program / Online community of members 2008 Financial Snapshot Support and Revenue A Grants & foundation support / $8000 B Community donations / $124, C Corporate sponsorships / $39, D Other / $12, Total / $184, D A Program & Operations Expense A Programs / $83,000 (Outreach, support, education & awareness) B Administrative / $32,000 C Fundraising & events / $31,000 Total / $147,000 What is MitoAction.org? MitoAction.org is a community dedicated to improving care and quality of life for patients and families affected by mitochondrial disorders. As a 501(c)3 non-profit organization incorporated in 2005, MitoAction has grown from 200 members to over 3000 in just 4 years using innovative outreach initiatives. Patients, parents, nurses and physicians from Boston area hospitals created MitoAction specifically to advance support, patient education, and disease awareness. C B A B C The mission in Action MitoAction s core mission is to help patients and families navigate the complex world of Mito through its dedication to quality of life initiatives for the patient and caregiver community, commitment to accessible, on-demand education and building a patientfamily-caregiver-clinician community. MitoAction provides free programs and resources, which directly fill the need for education and support for the estimated 1 in 4000 children and adults who are physically, medically and economically disadvantaged by Mito. MitoAction.org is proudly supported by: / Boston Bruins Foundation / Children s Hospital Boston / Edison Pharmaceuticals, Inc. / Massachusetts General Hospital / Ropes & Gray, LLP / Sirtris Pharmaceuticals, a GSK company / Tufts Medical Center Designed and donated by Stoyan Design in Costa Mesa, California / Images courtesy of Derek Wilmot Photography 2009 MitoAction Inc. All rights reserved.

6 WITH YOUR HELP, WE SEE MANY MORE GOOD DAYS AHEAD.

7 A PO Box Boston MA P 888-MITOACTION ( ) E info@mitoaction.org