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Mito Events Around the U.S. – Ohio

4 May

This coming Saturday, May 10th, is the 8th Annual Run Wild for a Cure in Cleveland, Ohio. They will have a 5K event and a 1 mile walk with entertainment, refreshments, a raffle and plenty of fun! The cost ranges from $15 to $25 per person, depending on age, and includes an event tshirt, admission to both the Cleveland Metroparks Zoo and Rainforest for the WHOLE day, and all the extras after the event! All proceeds will benefit the United Mitochondrial Disease Foundation. You can go HERE for more information and to sign up!

My daughter’s team is Team Ainsley – we’d love to have you join us and help raise money to find a cure!

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Epilepsy Articles Go Mainstream

15 Apr

As I have posted before, many mitochondrial patients suffer from seizures daily. Epilepsy is finally getting some much-needed publicity in the April 20th edition of Newsweek. You can read the articles on their website which I have linked below.

My daughter has suffered from seizures since she was 4 weeks old. The longest she has ever gone without a seizure is 35 days. At this point, she is having between five (5) and eight (8) per day. While that seems like alot, there were times she had 20 to 50 seizures a day, and there are plenty of other epileptics who, despite using multiple medications, have even more seizures every day.

Hopefully, Newsweek has brought an issue to the forefront that is long overdue. Some of the startling facts that these articles mention:

  • Epilepsy is as common as breast cancer and takes as many lives.
  • Public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).
  • The mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population.

Click on these links to read more and pass this information on to everyone you know – since one in ten people will suffer a seizure in their lifetime.

A Storm in the Brain

In the Grip of the Unknown

Agony, Hope & Resolve

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Letter to President Obama

3 Feb

A leading group of doctors and scientists have banded together and sent a letter to President Obama urging him to include mitochondrial medicine and research among his top health priorities. The letter states, in part, that the mitochondria are important in a large variety of medical conditions and research in this area will greatly improve the health and well-being of millions of American citizens.

“Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimer’s disease, Parkinson’s disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process,” the letter to President Obama states.

The signature list on the letter reads like a whos-who in the mitochondrial world. Almost every leading physician, scientist, and mitochondrial medicine clinic in the United States is represented in some capacity. The UMDF helped to spearhead the letter and garner the support for it.

I have posted the letter in our articles section (here). Its a great letter to get information about mitochondrial disease from and I would urge you to write something similar and send it to your congressmen – both on the state and federal level. Together, we can make a difference.

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Ohio passes Mitochondrial Disease Awareness Week

17 Jan

At the end of December, 2008, the Ohio General Assembly voted unanimously to enact a Mitochondrial Disease Awareness Week. The Third week in September is now known as Mitochondrial Disease Awareness Week in Ohio. The Bill states:

The third week of September is designated as “Mitochondrial Disease Awareness Week” to raise awareness of the existence of mitochondrial disease and its symptoms.

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