#MJFFchat Now evaluating individuals who may be at risk for #Parkinsons due to genetic factors in #ClinicalTrials for biomaker

— michaeljfox.org (@MichaelJFoxOrg) May 9, 2012

Yesterday The Michael J. Fox Foundation for Parkinson’s Research hosted the second call in our ongoing Seminar Call Series on Hot Topics in PD Research, updating the Parkinson’s community on various approaches underway to develop Parkinson’s disease-modifying therapies and discussing how biomarkers affect our ability to test these therapies.

Hosted by Michael J. Fox Foundation CEO Todd Sherer, PhD, and joined by President and Senior Scientist at the Institute for Neurodegenerative Disorders, Ken Marek, MD, the discussion highlighted our current understanding of neurodegeneration, discussed approaches and clinical research underway in the U.S. and abroad, and addressed the challenges of testing potential therapies. Continue reading “Seminar Call Series Recap: Parkinson’s Disease-modifying Therapies and Biomarkers” »

This Parkinson’s Awareness Month was a busy one—at The Michael J. Fox Foundation and throughout the Parkinson’s community. April was filled with promising research news, innovative partnerships, surprise appearances, great media hits, key milestones, new friends and more.

The results: More people are aware of the urgent need to speed better treatments—and a cure—to patients. And they’re ready to take action.

A few of April’s highlights: Continue reading “Recapping Parkinson’s Awareness Month” »

In spring 2009, personal genetics company 23andMe announced that it would recruit 10,000 people with Parkinson’s to contribute DNA for research to illuminate the role of genetics in PD. Three years later, 7,500 people with Parkinson’s across 49 U.S. states and 26 countries have joined what has become the largest Parkinson’s community for genetic research worldwide.  23andMe researchers are making progress toward building a greater picture of the underlying causes of the disease, genetic and otherwise.

“23andMe’s unique initiative leveraging DNA technology, the Internet, and patient participation is already enhancing understanding of Parkinson’s disease,” says Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF). “Ongoing results could open new approaches to developing drugs.”

There are many reasons for conducting genetic studies tied to PD.  One is to better predict an individual’s risk for developing the disease in the long-term.   Another reason is that, by studying genetic mutations, researchers hope to better understand the molecular processes taking place during the course of PD, in both genetic and sporadic cases of the disease. This could lead to improved drugs to counteract these processes.

MJFF has been a publicity partner to the PD Research Community, helping spread the word to people with Parkinson’s about the opportunity to speed research progress by mailing in a saliva sample to 23andMe to collect the DNA it needs to analyze people’s genetics.

Today, Sherer, Michael J. Fox, and Foundation Co-Founder Debi Brooks are visiting 23andMe’s Mountain View, California offices to see the operation first hand.

“The Foundation has played a major role in research progress we’ve made to this point,” says Emily Drabant, PhD, Research Development Manager at 23andMe. “Today’s visit gives us the chance to share updates with Todd, Michael, and Debi personally — and think through opportunities to continue our fruitful collaboration.”

Read on to learn more about some of 23andMe’s advances in research.

Continue reading “Navigating the ‘Many Roads to Rome’: MJFF Partner 23andMe Drives Genetic Research Toward Drugs to Treat Parkinson’s Disease” »

Today, eWeek profiled The Michael J. Fox Foundation’s new web based tool, Fox Trial Finder, and discussed the motivation behind creating an easy, user friendly platform for matching interested volunteers with clinical trials. In an interview, Chief Digital Officer Laxmi Wordham spoke to the usability of the tool, “Users can search the matching system without creating a profile by answering three questions: whether you have Parkinson’s, your location and stage of diagnosis. A key to the three-question matching system is its simplicity.” Read more on Fox Trial Finder from Wordham, CEO Todd Sherer and Michael J.Fox in the full article.

Today, The Wall Street Journal’s Informed Patient column profiled the emerging platforms to address a gap in clinical trials and volunteers. Key among those platforms is the Foundation’s innovative new tool, Fox Trial Finder, a web-based solution matching interested volunteers with clinical trials.

Titled “Services Match Patients with Clinical Trials,” the article profiles the Fox Trial Finder user success story of Claudia Garrido-Revilla and highlights revealing new survey results from the foundation.   Continue reading “Official Launch of Fox Trial Finder Featured in The Wall Street Journal Today” »

For many reasons, many people struggle with how, when, and with whom to share the news of their Parkinson’s diagnosis. Former NASA astronaut and military test pilot Rich Clifford is no exception. But he wasn’t about to let Parkinson’s stop him from flying high.

Clifford was diagnosed in 1994 at age 42, four years after he’d been asked to join NASA’s elite astronaut corps. Two years later, he was climbing aboard the shuttle Atlantis. While NASA’s medical staff and senior management knew he had PD — and were confident in his ability to fly — few others were aware. Clifford shares his journey in an in-depth interview in the latest issue of Neurology Now. Of his decision to keep his PD private, he says, “I didn’t want to be identified as the man with PD flying in space. Plus I felt the focus should be on the mission, not someone on the mission.” He hopes his story will offer hope to other patients, encouraging them to not “let PD drive what you want to do. Remember that you’re in charge of your future.” Continue reading ““Don’t Let Parkinson’s Disease Drive You:” One Astronaut’s Story” »

Steve DeWitte

While Steve DeWitte is new to The Michael J. Fox Foundation’s (MJFF) Patient Council, he is not new to patient advocacy. Although his involvement started small, “it quickly grew,” he says. “I started to receive notes of thanks from fellow People with Parkinson’s (PWP) for my efforts on their behalf.” His outreach expanded, once he realized he was making a difference that benefitted others.

Shortly after his Parkinson’s diagnosis in 2005, Steve established a support group for young-onset patients in Connecticut. Membership has grown from eight members in 2006 to more than 150. Alongside a growing number of dedicated volunteers, the Parkinson Young-Onset Support Group of Connecticut incorporated as a 501(c)3 charity last year, and launched a second support group. Continue reading ““Don’t Worry. Keep the Faith:” Optimism about the Options Ahead for Parkinson’s Patients” »

In this second edition of “The Sherer Report,” an ongoing series, Todd Sherer, PhD, MJFF CEO, provides an update on progress from the front lines of Parkinson’s research, and the implication this holds for those living with PD today.

Patients living with Parkinson’s today have a clear unmet need for improved treatment options to manage symptoms and increase quality of life. Current dopamine-based treatments are inadequate — they address only a subset of symptoms, lose effectiveness over time, and are marked by significant side effects such as dyskinesia (uncontrollable and debilitating movement). The Foundation continues to see encouraging progress toward new treatments that bypass the dopamine system altogether, as well as new formulations of dopamine replacement therapies that could address shortcomings of current treatments. Continue reading “The Sherer Report: Progress in New Drug Targets, Dopamine-Based Therapies and Clinical Trials” »

For Team Fox marathoner Peter Bleiberg, participating in a clinical trial is an important opportunity — and, he feels, an obligation. So in the four years since his Parkinson’s diagnosis, he’s already taken part in three trials and is looking forward to creating his profile on Fox Trial Finder.

Peter’s diagnosis marked the beginning of a new chapter in his life, and a new challenge. Inspired to do whatever he could to help other Parkinson’s patients, he joined Team Fox and has run the Boston Marathon three times to raise funds for The Michael J. Fox Foundation. In addition to his six to 20 hours of training every week, he encourages people to get involved, especially through clinical trials. Continue reading “Running Toward a Cure: In the Clinic and on the Course” »

Bob and Cecily Harmon

The news of a Parkinson’s diagnosis can be very alarming. Team Fox member and mentor Bob Harmon recalls March 3, 2006 as the “day the earth stood still.” For two years prior, Bob noticed changes in his motor and walking skills: a tremor in his right hand that eventually made eating near impossible, and a gait he thought was associated with old age. As shocked as he was when his neurologist confirmed a Parkinson’s diagnosis, Bob was able to put things in perspective with the help of his wife, Cecily. She simply responded, “Thank God it’s not something that will kill you in 90 days.” Continue reading “Bob Harmon and Family: Turning a Parkinson’s Diagnosis into Action” »