Andrew and Laura Slabin with their children

While Andrew Slabin’s mom, Carole, was diagnosed with Parkinson’s almost 25 years ago, she wouldn’t share the news with her children for another 20 years. But once she did, Andrew says it brought their family closer—and inspired both him and his sister to take action.

At the time of her diagnosis, Carole was in her 40s. Her husband knew, but she didn’t want to burden her two children, who were in high school and college. Andrew says, “I think she felt we had enough to worry about then. I know it was a burden for her staying silent all those years—and is a relief now that she’s told us. But it was her right, and we respect that.” Continue reading “Ending the Silence to Find a Silver Lining” »

MJFF Board member Karen Finerman shared an exclusive essay on women and money with designer Tory Burch for Mother’s Day.

My mother’s message about money to her four daughters was unconventional at the time: You must make your own. As a stay-at-home mom, it was clear she felt her own limitations by not having an independent source of income. She made it known to me from an early age that there was no other way: You must take control of your financial future and be able to support yourself.

Considering she’s the president and co-founder of one of the most successful hedge funds in New York, it’s probably worth taking her money advice seriously. Continue reading “Karen Finerman on Women and Money” »

Secretary of Health and Human Services (HHS) Kathleen Sebelius today unveiled specific elements of the National Alzheimer’s Project Act (NAPA). The five-pronged research and education initiative aims to develop effective treatments and cures for Alzheimer’s disease and related dementias by 2025.

To help accelerate this urgent work, the President’s proposed FY 2013 budget provides a $100 million increase for efforts to combat Alzheimer’s disease. These funds will support additional research ($80 million), improve public awareness of the disease ($4.2 million), support provider education programs ($4.0 million), invest in caregiver support ($10.5 million), and improve data collection ($1.3 million).

“These actions are the cornerstones of an historic effort to fight Alzheimer’s disease,” Secretary Sebelius said. “This is a national plan–not a federal one, because reducing the burden of Alzheimer’s will require the active engagement of both the public and private sectors.” Continue reading “U.S. Department of Health and Human Services Unveils National Plan for Alzheimer’s” »

Firms can now map a person’s full genetic profile faster and cheaper than ever before— it’s a trend which could have important implications in health care, and it’s one that continues to get coverage in the nation’s major media outlets.  In March, The New York Times wrote that new technology to this end is raising hopes for advances in medicine.

Today, The Wall Street Journal reports that the emergence of this very technology creates a new question: How to translate knowledge of a person’s genetic profile into better health care.  According to Journal reporter Amy Dockser Marcus: Continue reading “Can Genetic Profiling Translate into Better Health Care?” »

Guest blogger Peter Burne is a member of the Parkinson’s Progression Markers Initiative (PPMI) Patient Council. Peter recently attended the annual PPMI meeting in New York City. Below Peter shares his impressions from the meeting and why he decided to get involved.

Early in May I had the opportunity to attend the Parkinson’s Progression Markers Initiative (PPMI) annual meeting held in New York City. PPMI is a five-year international study sponsored by The Michael J. Fox Foundation (MJFF) to identify biomarkers that reveal the progression of Parkinson’s disease (PD). A biomarker is a substance, process or characteristic in the body that is associated with the risk, presence or progression of a disease.  A good example of a biomarker is high blood pressure for potential cardiovascular disease.

There is currently no known biomarker for PD. Finding one would provide scientists with a critical tool to predict, objectively diagnose and monitor the disease. It would also allow researchers to determine which medications work and which do not, important information for pharmaceutical companies that might invest in developing drugs to treat Parkinson’s.    Continue reading “All These People, Working for Us” »

#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” »

Since her Parkinson’s diagnosis in 2005, Nancy Kaminsky and her husband, Rich, have been “putting one foot in front of the other,” she says. But things changed within the past year, when she began experiencing dyskinesia, the debilitating, uncontrollable movements that are a common side effect of the gold-standard treatment for PD. “Now,” she says, “it’s difficult to feel like you’re moving forward.”

Residents of Miami, Florida, Nancy and Rich have tried to manage this troubling side effect by working with her doctor to find the optimal dosage of levodopa-carbidopa. If she stays under a certain threshold, she can more effectively stave off the dyskinesia. But that also limits her relief from the equally debilitating motor symptoms of Parkinson’s. As with many patients, Nancy has turned to exercise, which has been helpful. With her ramped up exercise regimen, she’s even noticed she can better tolerate the lower dosage of levodopa-carbidopa.

While she and Rich maintain a positive outlook—and a good sense of humor—Nancy admits her dyskinesia is both frustrating and embarrassing. “You feel like you’re not in control,” she says. They recently attended a concert with some friends when her dyskinesia began, which is often worse at night. “It’s so unpredictable—you just never know when it will start. Nonetheless, you deal with it as best you can.” Continue reading “Dealing with Dyskinesia as Best You Can: One Couple’s Story” »

How your brain processes dopamine may define whether you’re more prone to bust your can or sit back and slack.  This, according to a new study from Harvard Medical School and Vanderbilt University published in a recent issue of the Journal of Neuroscience.

WebMD reports that study participants who had higher levels of dopamine in two areas of the brain known to play a role in how we process reward and motivation were busy bees. Those who were less willing to work hard had higher levels of dopamine in a different brain area which is involved in emotion and perception of risk.

Dopamine is a buzz word for people with Parkinson’s disease (PD), whose brains produce lower levels of the neurotransmitter.  While this lack of dopamine itself is known to lead to PD motor symptoms such as rigidity and slowness of movement, it may also create biochemical reactions throughout the brain that can lead to non-motor symptoms such as apathy and depression. Continue reading “Dopamine: Drill Sergeant or Lazybones?” »

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” »

“When I first started taking medication after my diagnosis, I was fine. To the point that I wanted to think I’d get over Parkinson’s,” shares Annette O’Brien, of Orlando, Florida. Almost 10 years later, the disease now exerts much more control over her day—especially through her dyskinesia, the debilitating, uncontrollable movements that are often a side effect of the gold-standard treatment for PD.

Annette says she wasn’t the first to notice her dyskinesia; others realized she was moving before she did. As the side effect became more apparent a few years ago, she says that she didn’t want to go places like she used to. She admits, “I’m embarrassed that I felt embarrassed, but I knew I looked funny.” The dyskinesia also causes her to drop things, and its exaggerated movements make her neck and shoulders tired. While she tries to manage her condition with medication, some aspects are out of her control—like stress.

A former school teacher, she loves being around children—especially her three grandchildren and extended family. But it can be difficult to keep up with their level of activity. She’s learned it helps her to take a “time out” in her room if she feels overwhelmed. “I can hear them laughing from my room,” she says. “Even if I can’t be with them in the moment, it makes me happy.” Continue reading “Hope for a More Dependable Day: One Patient’s Story of Dyskinesia” »