Foundation for Mitochondrial Medicine

AA

A A
Foundation for Mitochondrial Medicine

Rare Disease Day

Profile Photo
Help FMM observe Rare Disease Day 2017:  “Join us in making the Voice of Rare Disease Heard”

Rare Disease Day is for patients, care givers, researchers, friends – for all of us – to show our support for the approximately 30 million people in the United States, and estimated 350 million worldwide, who suffer from over 7,000 different rare diseases and disorders.

Rare diseases truly do not impact a few, but many, when we add up all the diseases that fall into the rare category.  Research and awareness is critical as breakthroughs surrounding rare diseases so often help answer difficult questions asked by more commonly known diseases, aiding an even larger circle of patients.

You can get involved in the Rare Disease movement in a meaningful way with your friends at FMM. Email us at info@mitochondrialdiseases.org to join the #give28on28 movement! Thank you for caring about the rare disease community.https://fmm.ejoinme.org/give28on28

More information on the national and global Rare Disease movement, visit

http://www.rarediseaseday.org

Join #give28on28 movement for Rare Disease Day 2017

Rare Disease Day is for patients, care givers, researchers, friends – for all of us – to show our support for the approximately 30 million people in the United States, and estimated 350 million worldwide, who suffer from over 7,000 different rare diseases and disorders.

FMM Greater Giving cover 2017Rare diseases truly do not impact a few, but many, when we add up all the diseases that fall into the rare category. Research and awareness is critical as breakthroughs surrounding rare diseases so often help answer difficult questions asked by more commonly known diseases, aiding an even larger circle of patients.

How can I get involved in the Rare Disease movement?

Please join our #give28on28 campaign to raise awareness and support research efforts for mitochondrial disease.

During the month of February we really hope you’ll help us raise awareness and raise funds for research of our rare disease, mitochondrial disease, by donating $28 in honor of Rare Disease Day (globally recognized 2/28/2017). And we hope that you, as an FMM Ambassador, will encourage your friends to donate as well.

Our goal is for our FMM Ambassadors to raise $28 from 28 different friends by February 28. If you go over that number of friends or amount, that’s great! And if you don’t, that’s no problem too. Our primary objective is to raise awareness for Mitochondrial Disease while raising funds for research of this rare disease.

BUT WAIT, THERE’S MORE! The Ambassador who gets the most friends to donate wins two tickets to attend the Keynote Address for the FMM-UMDF Mitochondrial Medicine Symposium on Friday, April 7 and complimentary lodging on April 7 at the Grand Bohemian Hotel in Birmingham, Alabama for the Patient/Families Day to be held, on Saturday, April 8

All we need you to do is post or email information on your social media that we’ll send to you (which you can use as is or change to fit your style) 4 times during the month of February. Our goal is to make this turnkey for you so it takes as little time as possible.

If you’d like to be a part of the #give28on28 campaign that runs during the month of February, or if you have questions, please email FMM at DONATEinfo@mitochondrialdiseaes.org, subject
line: #give28on28.

Thank you for caring about the rare disease community!

Watch the video to learn more about the global movement

Rare Disease Day – Voices of Mitochondrial Disease – Colby Wren

More than 30 million Americans live with a rare disease. February 29, 2016 marks the ninth year that the National Organization of Rare Diseases (NORD) will mark Rare Disease Day.

On February 29, people living with or affected by a rare disease, patient organizations, politicians, caregivers, medical professionals and researchers come together in solidarity to raise awareness of rare diseases. The 2016 theme is “Patient Voice” in recognition of the crucial role that patients play in voicing their needs and in creating change that improves their lives.

Meet Colby Wren, One of the MANY Voices of Mitochondrial Disease

Some of you may already know Colby from Hope Flies Home Run Challenge, Hope Flies with the Braves or even the special featured on CNN.

From the outside, you would never know that Colby has mitochondrial disease. When he practiced and played football games, he would get sick during and after each. Now that he’s been diagnosed, he knows mitochondrial disease is just something in his life he has had to learn to manage on a daily basis.

Colby and Fans at Hope Flies Home Run Challenge

Colby and Fans at Hope Flies Home Run Challenge

Physically, Colby was never in better shape than when I first started sports training. My body took the initial training really well, but after the first year it really took a toll. I began getting many of symptoms of mitochondrial disease, which I had neglected noticing.

Needless to say, when the season ended and he had the opportunity to rest, he did so freely. Checkups and blood work during the times of high activity had very negative numbers when it came to my mito metrics, but Colby noticed that other areas my body was thriving because he was in great shape. The same cycle occurred his second year playing baseball at Georgia Tech: get in great shape, hit a wall, and that year his grades hit an all-time low. Georgia Tech is challenging enough when you are just a student there, but when you are a student with incredible mental and physical fatigue, those calculus classes and science classes can be ruthless. Falling just under a 3.0 my freshman year, my sophomore year was very lackluster and I struggled to recall almost anything that I studied for. This is when I knew a change needed to occur.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

If Colby was a baseball star with all of the talent in the world, he might have thought twice about the decision to stop playing baseball. Meeting with Dr. Shoffner during his last semester playing gave me some incredible insight. Colby’s body, though in shape, was not as healthy as he needed it to be. But when you’re given options to continue playing a few years versus being able to be healthy and active for your future generations it is a very simple decision. Colby immediately gave his body lots of rest and neglected his health, which was the most important in the long run.

Colby is currently an Ambassador for the Foundation for Mitochondrial Medicine and sharing his story daily to help us raise awareness and fuel connections.  Colby helped us launch the Hope Flies Home Run Challenge in 2012 and has been an active part of our Hope Flies events in the Atlanta area.

Colby has been an inspiration to many others affected by mitochondrial disease and even called a “hero” by one mito mom!

 

Eat a Slice on Rare Disease Day to Raise Awareness

Join FMM at a participating Your Pie location on
Monday, February 29th for Hope Flies with Your Pie on Rare Disease Day!

HFYPPoster.Final

The Foundation invites those outside those areas to virtually join in the fundraising and awareness via “Eat a Slice for Rare Disease Day” and participate by eating pizza on February 29, posting a picture of their pizza dinner online and making a donation to the Foundation for Mitochondrial Medicine.

DONATE

Eat a Slice on Rare Disease Day to Raise Awareness

Help Raise Awareness for Mitochondrial Disease on Rare Disease Day – February 29, 2016

HF Eat a Slice Pizza-webOn February 29, 2016, the Foundation for Mitochondrial Medicine will help mark the 9th annual Rare Disease Day – an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  According to the Orphan Drug Act of 1983, any disease affecting fewer than 200,000 people is considered rare.  There are nearly 7,000 rare diseases affecting nearly 30 million Americans, resulting in almost one in ten Americans suffering from rare diseases.

To help raise awareness of mitochondrial disease, the Foundation is partnering with Your Pie restaurants in Atlanta, Athens and Birmingham to donate a portion of dinner receipts on February 29 to the Foundation.  See details below.

The Foundation invites those outside those areas to virtually join in the fundraising and awareness via “Eat a Slice for Rare Disease Day” and participate by eating pizza on February 29, posting a picture of their pizza dinner online and making a donation to the Foundation for Mitochondrial Medicine.

DONATE

The national sponsor of the day in the U.S. is the National Organization for Rare Disorders (NORD), and the global sponsor is the European Organization for Rare Diseases (EURODIS). Other than dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, fine information and get treatment.  The rarity of their conditions makes medical research more difficult.

The Foundation for Mitochondrial Medicine supports NORD’s efforts in the US because although mitochondrial disease is becoming less rare (1 in 2,500), it is related to many more familiar diseases including Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease, muscular dystrophy and chronic fatigue syndrome.  Diagnosing mitochondrial disease can be a long and frustrating journey for a patient or a family because it often looks like several other disorders.

“Rare Disease Day gives patients and families of those with mitochondrial disease another opportunity to build awareness of the disease by sharing their stories and by participating in both the Your Pie and the virtual “Eat A Slice” campaign,” said Laura Stanley, executive director of the Foundation for Mitochondrial Medicine.  “The more awareness we gain, the more we can help influence global collaboration towards a cure for mitochondrial disease.”

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. Mitochondrial disease is an energy production problem that occurs when the cell’s mitochondria, or “power plants,” don’t function properly and create an energy crisis. The disease primarily affects brain, heart and muscle cells in varying degrees.  Treatments and cures for mitochondrial disease can impact cures for related diseases like Autism, Alzheimer’s, Parkinson’s, and muscular dystrophy among others. For more information on the Foundation and information about funding of specific research projects, please visit www.mitochondrialdiseases.org.

Join FMM at your local Your Pie on
Monday, February 29th to Eat a Slice for Rare Disease Day!

HFYPPoster.Final

Rare Disease Day – February 29, 2016

More than 30 million Americans live with a rare disease. February 29, 2016 marks the ninth year that the National Organization of Rare Diseases (NORD) will mark Rare Disease Day.

On February 29, people living with or affected by a rare disease, patient organizations, politicians, caregivers, medical professionals and researchers come together in solidarity to raise awareness of rare diseases. The 2016 theme is “Patient Voice” in recognition of the crucial role that patients play in voicing their needs and in creating change that improves their lives.

Quote from Jason Thomas

 

Rare Disease Day creates a community that allows the voices of rare diseases to be heard. Mitochondrial disease affects about 1 in every 2,500 Americans and can be caused by genetics and mutations to the mitochondrial or chromosomal DNA or can be acquired due to metabolic, aging or environmental stress. Despite significant advances in recognizing, diagnosing and treating patients over the last 40 years, effective treatments that are targeted to the specific deficit in a patient are still lacking. Mitochondrial dysfunction is an underlying cause of many neurodegenerative diseases, cancer and cardiometabolic syndromes. From Parkinson’s to Alzheimer’s, diabetes and beyond, an understanding of mitochondrial stresses can lead to better treatments and quality of life for many.

Quote.DesmondThe Foundation for Mitochondrial Medicine (FMM) is bringing attention to Rare Disease Day with a special promotion and fundraiser with select Your Pie pizza restaurants in Georgia and Alabama. From 5 to 9 pm on Monday, February 29, multiple locations of Your Pie restaurants will donate 20% of the dinner check proceeds to FMM. To participate, simply visit a Your Pie restaurant for dinner and mention the Foundation and Rare Disease Day at the register during checkout. For more information on the event, visit www.hopeflies.org.

By raising awareness and the voice of the rare disease community, FMM, NORD and other participating organizations hope to increase and improve rare disease research and orphan drug development, support the development of national plans and policies for rare diseases, create equal access to quality treatment and care for earlier and better diagnosis of rare diseases and to support people living with a rare disease and their families.

NORD was established more than 30 years ago to provide services for patients and their families, rare diseases organizations, medical professionals and those seeking to develop new diagnostics and treatments for rare disease. NORD has an advocacy and policy team that works with policy makers in both DC and at the local level to help inform policies surrounding rare disease patients. NORD’s Rare Action Network is the country’s leading advocacy network at the state and local level established to improve the lives of the 30 million Americans living with a rare disease. NORD also provides information about rare diseases, patient organizations and other resources for patients and families. It also promotes awareness of rare diseases among physicians and other medical professionals. For more information on NORD, visit www.rarediseases.org

Faces of Mitochondrial Disease 10-2014 (2)

Stay Connected with FMM

  • This field is for validation purposes and should be left unchanged.
Translate »