Source:: Wilkins Summer Newsletter
Source:: Wilkins Summer Newsletter
By Allyse Falce
Today, The Michael J. Fox Foundation (MJFF) and the Parkinson’s Action Network (PAN) announced plans to operate as a single organization, with the goal of advancing public policy priorities and better treatments for people living with Parkinson’s disease (PD).
This unification builds on the strengths of both organizations, combining MJFF’s research expertise and PAN’s extensive knowledge of public policy to speed a cure for PD. Key staff members from PAN will join the Foundation and programmatic activity will transition to MJFF.
The Foundation launched a dialogue with patients and close supporters of both organizations to ensure MJFF’s policy work reflects the top concerns of the community. The conversations began with a webinar and a panel discussion at the annual PAN Forum, and additional feedback was captured through a survey.
Claudia Revilla, one such supporter of both MJFF and PAN, has been living with Parkinson’s disease since 2010. As a Fox Trial Finder Ambassador, Team Fox member and PAN Illinois Assistant State Director, Revilla has played an active role in the work of the two organizations. We asked her to share her thoughts about what unification means for the future of Parkinson’s public policy.
As a PAN grassroots advocate and an MJFF supporter, everything I do is to speed research toward a cure for Parkinson’s disease. But there is another, equally important part of finding a cure: supporting public policies that improve the lives of patients.
We can’t conduct studies if federal research funding is cut. We can’t bring new drugs to market if they get stuck in complicated regulatory approvals. And we won’t have the best quality of life if we lose access to therapy services.
I see nothing but benefits of this unification. Public policy will further MJFF’s mission to find a cure, and to ensure better quality of life for people living with Parkinson’s today. We are all in this together: all for one and one for all.
To read a white paper summarizing community input on top priorities for Parkinson’s public policy, visit www.michaeljfox.org/policy.
Contact your elected representatives and encourage them to support important Parkinson’s policy initiatives.
Stay up-to-date on Parkinson’s policy and advocacy news by signing up for email updates below.
Source:: Fox Feed Blog
The visionary management and computing pioneer, and Parkinson’s patient since 2000 was a long-time advisor to MJFF who had a profound impact on the Foundation.
The Michael J. Fox Foundation is mourning the loss of Andy Grove. The computing pioneer and revered management expert, employee number three and longtime CEO of tech giant Intel Corp., and senior adviser to the Foundation, was 79. He was diagnosed with Parkinson’s disease around the time of the Foundation’s launch in 2000 and immediately became engaged with the work of MJFF as a funder, strategic adviser and big thinker.
Andy was famously dissatisfied with the status quo of research and the slow rate of progress, and he was integral in influencing the Foundation’s strategy and culture over the years. His impact is evident in MJFF’s commitment to accountability, failure analysis, and willingness to change and adapt. Just as in Silicon Valley, Andy was unafraid to challenge assumptions about biomedical research. He saw opportunity for improved collaboration across industry and academia and vigorous real-time re-assessment of risk-taking.
Today, Foundation leaders are sharing fond remembrances of working with Andy:
Todd Sherer, PhD, CEO:
He could be challenging and demanding but with the goal of making our work better, more impactful. You never left a conversation with Andy without reworking your project and ideas for the better. Over the years, Andy took great pride in the successes of the Foundation and took a personal interest in many members of our staff. On a personal note, we feel his loss deeply. We will miss the arguments, the humor, the sarcasm and most importantly his friendship. Andy challenged all of us to be better than we thought we could be, to reach for goals we thought were unattainable, to never be satisfied and to always remember that we work for all of those impacted by Parkinson’s disease. Our thoughts are with Andy and his family at this time.
Debi Brooks, Co-Founder:
Andy’s passing is a great loss to me personally, to my colleagues at MJFF and to the world. Andy was a great man, known for his amazing business mind and for his work with Intel. Our worlds collided when he was diagnosed with Parkinson’s around the time the MJFF was getting started. Meeting him was one thing (I remember being so intimidated)… but, ultimately, I had the amazing opportunity to work closely with Andy for 15 years. He was a mentor, a conscience, an agitator, a deliberator and a friend. Nothing was accidental with him. Every question was well placed and every suggestion worth consideration. He helped shape how I thought about role of the Foundation. Learning from him was a challenge and a privilege. He demanded boldness and attention.
Andy is a reminder of the best and worst parts of my job: meeting truly great people and then losing them to PD.
David Golub, founding member, Michael J. Fox Foundation Board of Directors
When we started the Foundation’s research efforts, we set the bar high. We required innovative thinking, collaboration, immediate sharing of information and carefully delineated multi-stage planning. But nobody set the bar high like Andy. One of my first encounters with him came after an early meeting of our Board’s Research Committee. I called Andy and asked for candid feedback. “Needlessly self-congratulatory,” Andy remarked in a flat tone. It was at once deflating and motivating. That was Andy’s way.
Andy drove a key early Foundation decision — the decision to engage with industry and seek to catalyze industry investment in our fight to cure Parkinson’s. Prior to the Foundation’s groundbreaking work, it was highly unusual for disease charities to engage with industry. Instead, they tended to focus on support for academic research that languished between the lab and the clinic. If there was one decision that has defined the success and contribution of The Michael J. Fox Foundation, it was this one. And in this, Andy was one of our founding fathers.
Jeffrey Kordower, PhD, founding member, MJFF Scientific Advisory Board:
My first meeting with Andy was at an MJFF-sponsored meeting on cellular replacement strategies. We had a roundtable, and he basically tore into us saying that we didn’t know how to solve problems and that were going to be total failures. He didn’t do it in a mean way; he did it in a very direct way. It was the beginning of a friendship and working relationship.
Andy was incredibly irascible, incredibly direct and forced me to focus on problem solving and stay central to the core of what we were studying.
He was an absolute hero. He changed the world. It was an honor and privilege to have worked with him, and I very much enjoyed our many interactions.
Eugene Johnson, PhD, MJFF chief scientific officer (2006 – 2015)
Andy was an impact player who made MJFF better in many ways. He could be a curmudgeon (I think he took pride in that), but he could take it as well as dish it out. We will miss him.
Read more about Andy’s work with our Foundation and as a philanthropist over the years:
Source:: Fox Feed Blog
April is Parkinson’s Awareness month, and Team Fox is challenging its community of new and returning members to raise more than awareness by collectively fundraising $1 million by the end of the month! With 100% of Team Fox proceeds raised going directly to reseearch, join Team Fox in making April a million dollar month for Parkinson’s research.
Our Team Fox teens and kids have proven that fundraising expertise can be present at any age. In fact, some of our top fundraisers are kids under the age of 18, who have creatively utilized their talents to make an impact! By engaging their diverse networks of friends at school, on athletic teams and in extra-curricular groups, young people have the ability to inspire change and make a tangible difference. Here are some ideas designed to get teens and kids involved in fundraising this April and throughout the year:
There is no better time to join Team Fox and engage your community in unique ways! There are so many ways for each member of the family to get involved. Make a commitment to Team Fox this month, and help make April a million dollar month for Parkinson’s research
Source:: Fox Feed Blog
By Allyse Falce
Alpha-synuclein — the protein that clumps in brain cells of people with Parkinson’s — is not only a therapeutic target but also may be a measure of disease. Today, The Michael J. Fox Foundation (MJFF) launched the Systemic Synuclein Sampling Study (S4) to further investigate alpha-synuclein as a potential biomarker of Parkinson’s disease (PD). The study aims to determine if and how alpha-synuclein can be used to diagnose PD, track progression and evaluate the impact of therapies.
A biomarker — such as cholesterol level for heart disease — is a substance or characteristic in the body that helps track the presence or progression of a disease. Currently, there is no identified biomarker of Parkinson’s disease. Such a tool would transform diagnosis and treatment for people living with the disease today by helping to diagnose and intervene earlier and to test whether a potential therapy is altering the course of the disease.
The protein alpha-synuclein is the most promising Parkinson’s biomarker candidate because it’s been shown to clump in the brain cells of nearly all individuals with PD. But it’s also found elsewhere in the body, including saliva, spinal fluid, colon tissue, blood, skin and more. S4 will analyze these tissues and fluids to form a holistic picture of how alpha-synuclein around the body relates to Parkinson’s disease.
“Measuring alpha-synuclein levels in these biofluids and tissues could be a way to monitor Parkinson’s disease,” said Danna Jennings, MD, S4 principal investigator and senior director of clinical research at the Institute for Neurodegenerative Disorders. “Multiple studies have demonstrated the significance of alpha-synuclein as a potential PD biomarker, but none have measured alpha-synuclein levels in multiple biofluids and peripheral tissues in a single individual.”
S4 researchers hope to determine which biofluids and tissues are the most promising Parkinson’s biomarker sites. Moreover, the study will help scientists understand which measure of alpha-synuclein outside the brain could be used in clinical trials to assess the effectiveness of new therapies.
“I had symptoms for 10 years before my Parkinson’s diagnosis. Perhaps if we had earlier markers of the disease, I could have started treatment and contributed to research sooner,” said Peter Ortali, an S4 participant at the Institute for Neurodegenerative Disorders. “I believe in doing anything to help others with Parkinson’s. Participating in studies such as S4 will lead to more knowledge and earlier treatments. It’s worth the time.”
The study will be carried out at seven sites in the United States and Canada. S4 is enrolling 60 people with Parkinson’s across all stages of the disease and 20 control volunteers. As an observational study, S4 will not test any experimental drug. Participants will contribute to a large collection of data and biological specimens that will be used to further biomarker research.
Visit www.foxtrialfinder.org/S4 to learn more about S4, as well as other clinical trials and research studies recruiting volunteers.
Already registered with our online trial matching tool Fox Trial Finder? Make sure your profile is up to date to be matched with trials that need you, or browse for new studies taking place online or in your area.
Source:: Fox Feed Blog
Partners in Parkinson’s Birmingham is this Saturday, March 19 from 8:00 AM to 2:30 PM. The Parkinson’s Association of Alabama is thrilled to be the local partner for this fantastic event and we look forward to seeing new and old friends from throughout the state! The agenda for this event has been finalized and may be reviewed from the link below:
Partner’s in Parkinson’s is a strategic collaboration between The Michael J. Fox Foundation and AbbVie intended to inform and empower Parkinson’s patient’s and families so they may influence the best possible care through every stage of the disease.
To register and learn more about this great event, visit: PARTNERSINPARKINSONS.ORG/ATTENDBIRMINGHAM
By Allyse Falce
Phase III testing for the compound isradipine is progressing after a remarkably short recruitment period; 336 participants enrolled in less than one year. Slow recruitment is a significant roadblock to testing of potential treatments and slows the pace of bringing new drugs to market. This success advances the pace of this study and may serve as a model for other programs.
Isradipine is a calcium channel blocker currently prescribed to treat high blood pressure. It came to the attention of Parkinson’s researchers when data from large studies showed lower risk of Parkinson’s disease (PD) among people who took the drug for hypertension. Scientists believe isradipine works to prevent the death of dopamine-producing cells and therefore may slow the progression of PD. The Michael J. Fox Foundation (MJFF) funded pre-clinical work to make that connection, as well as the Phase II trial. In 2014, isradipine researchers received a $23 million grant from the National Institutes of Health to move the Safety, Tolerability and Efficacy Assessment of Dynacirc for PD (STEADY-PD) study into Phase III efficacy testing. Dynacirc is the commercial name of the isradipine hypertension drug.
Kevin Biglan, MD, MPH, associate chair of clinical research for the Department of Neurology at the University of Rochester, is co-principal investigator of STEADY-PD. Dr. Biglan spoke to MJFF about the study’s successful recruitment period, and answered some commonly asked questions about Parkinson’s disease and calcium.
MJFF: Congratulations on completing study recruitment. What kind of participants were you looking for and how did you find them?
KB: We were looking for newly diagnosed individuals who had not yet started treatment for PD. Traditionally, this is a very difficult population to recruit. These individuals are just getting the news that they have Parkinson’s disease, and they’re not necessarily thinking about participating in research. And a lot of newly diagnosed people need treatment right away, so that eliminates many potential volunteers.
About 60 percent of people enrolled directly through the 55 study sites. The second largest group came through the MJFF online trial matching tool Fox Trial Finder. One hundred people were prescreened through the site, and about half of them ended up enrolling. And another subset of participants were referred by neurologists outside of the study sites.
Our timeline was 18 months; we were six months ahead of schedule. We worked with MJFF on a recruitment plan, and we think our methods of communication with the study sites and with volunteers who came through other sources may be of use to the Parkinson’s research community. We’re planning to write an article and share those tactics soon.
MJFF: How does accelerated trial recruitment speed drug development?
KB: The biggest barrier to drug development is enrolling an adequate number of individuals into a study. A lot of the time and costs of trials are associated with this delay in recruitment. The longer it takes to get people into a study, the longer it takes for us to find the results.
MJFF: When might isradipine be approved to treat PD?
KB: The last person will be out of the study in November 2018. After that, it’ll probably be about three to six months before we have final results. That would put us into the beginning of 2019. If the results look promising, because it’s a readily available drug, it may be prescribed for Parkinson’s soon after.
MJFF: Many Parkinson’s patients who don’t have hypertension have asked if they should begin taking isradipine. Is this a good idea?
KB: At this point, we still don’t know that isradipine has beneficial effects on Parkinson’s disease, so we recommend that people don’t start taking this medication until we have more information. Also, low blood pressure is a symptom of PD, and if you don’t have hypertension, this medication may exacerbate that condition. There are other side effects, mainly dizziness and swelling, associated with isradipine, too. Certainly, before you start any medication you should talk to your physician about it. There could be something specific to you that might put you at higher risk of developing problems, so it’s not something people should start without some discussion.
MJFF: If a patient is currently taking another calcium channel blocker, should they switch to isradipine?
KB: If a person with PD needs to be on a calcium channel blocker, for whatever reason, high blood pressure or otherwise, and their cardiologist or primary care doctor thinks isradipine is a reasonable alternative choice, then there’s likely no harm in switching between calcium channel blockers. But again, that’s a discussion that needs to occur between the patient and physician.
MJFF: Since this is a calcium blocker, should people stop taking calcium supplements? Or cut out calcium-rich foods?
KB: There’s no reason to worry about calcium supplements or calcium-rich foods. With isradipine, it’s targeting a specific calcium channel in the brain that we think may play a role in the cause of Parkinson’s disease. Calcium itself is highly regulated in the bloodstream. You don’t need to stop taking calcium supplements or avoid calcium-rich foods; there’s no evidence that those things have any negative effect on Parkinson’s disease.
MJFF: Thanks for speaking with us, Dr. Biglan. Anything else you’d like to add?
KB: We’re incredibly grateful to the Parkinson’s community for their partnership in this study. It’s going to allow us to answer a very important question about whether this treatment can slow progression of Parkinson’s disease sooner than we would have been able to without the assistance of patients, their families, and advocacy and research organizations.
Source:: Fox Feed Blog