News

Highlights from the MitoAction Walk 08

Cristy Balcells — Fri, 26 Sep 2008 11:55:22 -0700

September 21st, 2008
Cambridge, Massachusetts

615 people came together for one cause, and the result was incredible!

Read the 2008 Mitochondrial Disease Awareness Week Press Release

Five years ago, before MitoAction even existed as an organization, a family who is dealing with the diagnosis of mitochondrial disease may have been alone in their efforts to understand and find support and advocacy for the disorder.

Rocco, You're Not Alone

Cristy Balcells — Fri, 08 Aug 2008 04:13:01 -0700

Congratulations Rocco on making it to the World Series! We continue to offer our encouragement and support.

Original Post August 8, 2008

Tampa Rays MLB player Rocco Baldelli Living with Mitochondrial Disease

He's in the news. His symptoms are vague. He looks tired.

Drug Trial begins targeting Mitochondrial Diseases: EXCLUSIVE AUDIO INTERVIEW

Cristy Balcells — Sat, 19 Jul 2008 06:51:51 -0700

Is there hope for a cure for Mitochondrial Disease? Perhaps the answer is closer than we thought.

On July 15, 2008 Edison Pharma and partner Penwest Pharmaceuticals announced that A0001, an "improved" variant of Coenzyme Q10 (CoQ10), has entered Phase 1 clinical development with healthy volunteers. Edison predicts trials in patients with inherited mitochondrial disease will begin in 2009.

Autism and Mitochondrial Disease

admin — Thu, 06 Mar 2008 00:00:00 -0800

This week, a finding from November of 2007 hit the news, after being sealed by Federal Courts to protect the plaintiff’s identity. The US government has conceded one vaccine-autism case in the Court of Federal Claims. Of significant interest, the vaccine is thought to have triggered the onset of an underlying mitochondrial disease.

The Mito Cocktail - March General Meeting

admin — Mon, 18 Feb 2008 00:00:00 -0800

Guest speaker Saad Dinno RPh talks about the “Mito Cocktail”. Join us as Acton Pharmacy’s mitochondrial disease specialist discusses the various vitamin and supplement ingredients that may be included in the Mito cocktail. He will help patients and parents to understand the basics about these supplements, who may use them and why, and possible side effects or interactions while taking them.

Shop to Support MitoAction

admin — Wed, 13 Feb 2008 00:00:00 -0800

Kirsten, a MitoAction member, reported that Barbara Morse Silva interviewed her kids Olivia and Harrison on WJAR Channel 10 Providence, New Bedford RI (NBC) about their Make A Wish Foundation of Rhode Island “wish granted” trip and their mitochondrial disease.

The story with pictures of Olivia meeting and fencing with Antonio Banderas is available here. Mr. Banderas is probably most famous for his movie role as Zorro.

February General Meeting

admin — Fri, 01 Feb 2008 00:00:00 -0800

MitoAction welcomed Valerie Powers Smith, Attorney-at-law, as guest speaker for the February General Meeting, February 1, 2008.

Topic: What you should know about disability rights

Committee Chairs Meeting

admin — Mon, 28 Jan 2008 00:00:00 -0800

Today, January 28th, the MitoAction committee chairs met by conference call to discuss the exciting ideas and projects ahead for 2008. Attending were: Lisa Parker, PR and Awarness Committee; Jean Shepherd and Wendy Helmka, Adult Advocacy Coalition; Kathy Graff and Kim Costello, Web Comittee; Anne Reckling, Publication Committee; Kirsten Casale, School Advocacy Committee; Christy Balcells, Executive Director; and Kim Lorimier, President, Board of Directors.

The top three goals for each committee were discussed. The following were discussed: