#FoxGala Raises Five Million for Research

By Allison Boiles

David Letterman, Denis Leary and John Fogerty — oh my! In a glammed up ballroom at the Waldorf Astoria New York, these talented headliners and 1,000 supporters of the Foundation gathered on Saturday, November 14 for A Funny Thing Happened on the Way to Cure Parkinson’s, MJFF’s annual benefit gala.

Raising more than $5 million for Parkinson’s research, guests of the gala were treated to a Marty McFly-themed opening number from host Denis Leary and comedic performances from Lenny Clarke, Jeff Ross and Larry Wilmore. Adding to the night’s impressive line-up, musical guest John Fogerty brought the house to their feet dancing and singing to classic rock songs including “Fortunate Son” and “Proud Mary.”

During a particular hilarious and touching moment, special bearded guest David Letterman joked about coming out from retirement to introduce Michael J. Fox and Tracy Pollan to the stage. David spoke fondly of Michael and his ability to balance the demands of his career with his Parkinson’s diagnosis, “To go out in front of a crowd of strangers without Parkinson’s disease takes gut. You do it with that diagnosis, that’s courage beyond human limits.”

Many long-time advocates of the Foundation and regular Funny Thing attendees also came out to show their support including MJFF Board member George Stephanopoulos and his wife Ali Wentworth as well as Julianna Margulies, John McEnroe, Katie Couric and Rachael Ray.

As in years prior, the Foundation’s Board of Directors cover all costs associated with the event so that every penny of the five million raised will go directly to fund promising research. To date, Funny Thing has raised more than $65 million to speed a cure for Parkinson’s.

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MJFF Pritzker Prize Winner Honored with Breakthrough Prize

By Allyse Falce

Scientific advances to speed a cure for neurodegenerative diseases were honored during the November 8 star-studded Breakthrough Prize ceremony.

The Breakthrough Prize, created by some of the biggest names in Silicon Valley — including Google’s Sergey Brin, 23andMe’s Anne Wojcicki, and Facebook’s Mark Zuckerberg — honors individuals who have made significant contributions in the fields of math, fundamental physics and life sciences. Winners take home $3 million.

This year, John Hardy, PhD, of University College London was awarded the prize for uncovering the genetic mutations that can lead to a buildup of protein “plaque” in the brains of people with early-onset Alzheimer’s.

An expert in both Alzheimer’s and Parkinson’s genetics, Dr. Hardy won The Michael J. Fox Foundation’s Pritzker Prize earlier this year for his 2003 work on the causal role of genetics in Parkinson’s disease
(PD), helping to revolutionize PD drug development.

Dr. Hardy and his colleagues published in Science that triplication of the alpha-synuclein (SNCA) gene caused Parkinson’s in a family with high incidence of the disease. This finding built on earlier research about the SNCA mutation in PD and is the basis for disease-modifying treatments in development today that seek to lower levels of the protein alpha-synuclein, a promising approach to slow or stop Parkinson’s progression.

Only 20 years ago, researchers believed genetics played little to no role in Parkinson’s. Dr. Hardy’s receipt of the Breakthrough Prize is an encouraging sign that our knowledge about PD and genetics has expanded. Alpha-synuclein is one of the most important drug targets, and Dr. Hardy’s work sheds a greater light on how cellular dysfunction can lead to disease.

Karl Deisseroth of Stanford University and Ed Boyden of MIT also received a Breakthrough Prize on November 8 for their work using light signals to treat Parkinson’s disease and other neurological disorders.

See the full list of 2015 Breakthrough Prize winners.

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Podcast: Keeping Step with Parkinson’s: Balance, Posture and Gait

By Allyse Falce

Balance, posture and gait issues are some of the most troublesome and difficult to treat Parkinson’s symptoms. While tremor and muscle rigidity can be treated with dopamine replacement therapy, these medications are less useful when it comes to how you walk and maintain your balance.

Dr. Chris Hass of the University of Florida says patients can better control their balance, posture and gait symptoms through motor therapies, exercise and physical therapy.

“It concerns me that in many cases we wait to treat gait and balance until the patient has fallen versus seeing a physical therapist well in advance of falling,” says Dr. Hass, “so it’s important to almost ‘pre-hab’ the system. “

Join us in our next Third Thursdays webinar to hear more about balance, posture and gait in Parkinson’s disease.

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Team Fox Members: Renew Your Membership for 2016!

By Liz Diemer

2015 has been an incredible year for the Team Fox community. In addition to seeing our largest active membership to date, we’re thrilled to be heading into the final months of the year on track to surpass a record-breaking $10 million milestone for the year — 100 percent of which will go directly to the Foundation’s research programs.

Inspired by this year, many of our members are finding creative ways to continue fundraising through the holiday season, while others have already set their sights on 2016. Together, our Team Fox members continue to drive toward the collective impact their efforts will have in helping to speed a cure for Parkinson’s.

Are you ready to join us for an even bigger and better year ahead? Join today as we kickstart another successful year of fundraising!

If you’re new to Team Fox, you can skip the below and simply register today!

If you’re a returning member, welcome back! The steps below will walk you through the process of renewing your membership and registering your 2016 Participant Center.**

Let’s get started:

1. Register for a 2016 Participant Center. If you have a personal page, simply register here for your 2016 Participant Center using your current login credentials. If you are a returning team member, your team captain will re-register your team and then send you the link to which you can re-register your personal page.

2. Add your 2016 event to the Team Fox Event Calendar. Don’t know what your event date or plans are yet? Don’t worry, you can add this information at any point throughout the year! Also, if you already added a 2016 event to your old page, it should automatically appear in your 2016 Participant Center.

3. Update your customized URL and personal page. If you wish to apply the same customized URL from your 2015 page, make sure to save and then delete the URL from your old page before applying to your 2016 page.

Have questions or need assistance? Please refer to this helpful Q&A or email us at TeamFox@michaeljfox.org.

**If you are a Team Fox Athlete and have already registered for your 2016 event, you do not need to re-register your membership or create a new personalized fundraising page. Similarly, if you plan to re-register for an upcoming 2016 sponsored race (i.e. Chicago Marathon, NYC Marathon, etc.) you will first need to go through the application process and will register with that specific event later this year.

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MJFF Conference Highlights Progress in Parkinson’s Research

By Rachel Dolhun, MD

The Michael J. Fox Foundation’s ninth annual scientific meeting — The Parkinson’s Disease Therapeutics Conference — took place on November 3 in New York City. Nearly 300 scientists and business professionals came together to hear the latest in Parkinson’s disease (PD) research. Here are a few of the exciting updates that were shared.

Disease-Modifying Therapies
The topic of glial derived neurotrophic factor (GDNF) — a protein that may prevent the loss of dopamine cells (and even regenerate those that are lost) — was first on the agenda. GDNF can’t be taken orally, so cells that continuously produce GDNF need to be implanted into the area of the brain where most dopamine cells are missing in Parkinson’s. Lars Wahlberg, MD, PhD, of biotech NsGene, Inc., explained how encapsulated cell therapy might make this possible. A Phase Ib safety study is planned for 2016.

LRRK2 kinase inhibitors — drugs that work against the LRRK2 genetic mutation that causes Parkinson’s in some — were next. MJFF’s Marco Baptista, PhD, discussed that these medications might help everyone with PD, not just those with the mutation. He shared the results of an MJFF-led consortium of three competing drug makers who cooperated (pooling their data and compounds) to determine that mild lung changes seen in pre-clinical testing did not cause breathing problems and were reversible. “There is a path forward for LRRK2 kinase inhibitors and this consortium is a collaborative model we can use to move ahead across Parkinson’s research,” said Dr. Baptista.

Symptomatic Treatments
Talk of symptomatic therapies was on optogenetics — combining light (“optics”) and genetics to treat Parkinson’s motor symptoms. Christopher Moore, PhD, Brown University, reminded us how cells communicate with each other — through electrical signals created by the opening and closing of ion (calcium, sodium, etc.) channels. Optogenetics allows scientists to place a light-sensitive channel inside nerve cells and then open or close that channel with light. Optogenetics is currently being studied in pre-clinical models and shows potential for lessening motor symptoms.

Research Tools
The presentation on research tools focused on finding imaging biomarkers (disease indicators) for cognitive (memory and thinking) problems in Parkinson’s. Kathleen Poston, MD, MS, Stanford University, spoke about how today’s clinical trials call for multiple tests (which can be costly and time-consuming) to look for patterns of cognitive problems. She and her colleagues wanted to see if a single test — a “resting state functional MRI,” which examines the brain while a person is relaxed — could replace all of them and accurately diagnose cognitive difficulties in PD. Their study results are currently being analyzed.

Parkinson’s Progression Markers Initiative “Super Session”
Five years into The Parkinson’s Progression Markers Initiative (PPMI) — MJFF’s landmark observational study to find PD biomarkers — the Principal Investigator, Ken Marek, MD, gave an update on how the number and types of participants has expanded, and the categories of valuable data these volunteers are contributing. Researchers reviewed what they’ve concluded thus far from PPMI imaging and genetics information. John Seibyl, MD, The Institute for Neurodegenerative Disorders, talked about why measuring PD with a brain scan is hard — the disease course is slow and variable — and why imaging might therefore not be the only biomarker for Parkinson’s. Andrew Singleton, PhD, agreed, saying, “We’re having a maturing view of Parkinson’s disease that it’s more than one disease, so we may need more than one biomarker to track it.” Dr. Singleton went on to discuss how analysis of PPMI data led to the identification of five potential predictive factors for PD — smell loss, age, gender, family history of PD and a genetic risk score.

Dr. Marek finished by telling the researcher attendees that all of the PPMI data is available to them —we hope they’ll take advantage of it to help us move closer to a biomarker and nearer to a cure.

Hot Topics in Parkinson’s Disease Research
Novel ways to deliver levodopa and innovative methods of tracking symptoms and disease progression rounded out the day. C. Warren Olanow, MD, Mount Sinai, brought us up to speed on dyskinesias (abnormal involuntary movements) and how continuous levodopa delivery might prevent them. He discussed Rytary and Duopa — the latest levodopa preparations to reach market in early 2015 — and then delved into formulations in development — the Accordion pill (designed to slowly release levodopa from the stomach) and continuous under the skin and oral administrations. The first two are in Phase III studies; the oral therapy is in Phase II trials.

Ray Dorsey, MD, MBA, University of Rochester, wrapped up with a potential research tool most of us have in our pockets — the smartphone. He spoke about how smartphone sensors could monitor PD symptoms and disease course, detect treatment response (as in measuring an improvement in balance after medication is administered), even differentiate people who have PD from those who don’t. He also discussed how smartphone apps that log symptoms (voice, dexterity and balance changes) could help find a biomarker, change the way research is done (reach more volunteers and decrease costs and time of clinical trials) and improve care for people with Parkinson’s disease.

It was a full day and a whirlwind tour of the latest research! We left, though, with a renewed energy and excitement about the progress that’s been made and what we hope to accomplish for people with Parkinson’s.

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Parkinson’s Diagnosis Galvanizes Microsoft Community

By Allison Boiles

For nearly three years Microsoft exec Matt Lydon hid his tremors and kept his Parkinson’s disease (PD) diagnosis a secret, unsure of how his network would react and the impact it would have on his career. In August, the vice president of worldwide search advertising decided to share his diagnosis in a meeting with hundreds of his colleagues.

A recent story on the Microsoft site details the moment Matt announced that he has young-onset Parkinson’s disease:

The room fell silent. Stunned eyes filled with tears. Yet even amid the initial shock, recalls Search Advertising Business Director Sarah McGovern, “The first thing everybody said is, ‘How can I help? What can I do?'”

Almost immediately, his colleagues formed their answer by helping to speed a cure through fundraising and lending their time and expertise to MJFF and other Parkinson’s organizations.

They began by holding fundraisers for the Northwest Parkinson’s Foundation, a nonprofit dedicated to serving the PD community in their home state of Washington.

The enthusiasm for supporting awareness and research efforts became infectious. In October, the Microsoft community raised $9,000 through a Team Fox fundraiser where employees took photos with a DeLorean, a real-life replica of the iconic Back to the Future time machine, to support The Michael J. Fox Foundation.

Matt recalls that when he was diagnosed, his immediate thoughts were of providing for his family and questions about his future. Since, he has been reinvigorated by taking action, saying, “Every year from now on is going to be tougher. When I got involved, I stopped focusing on the symptoms and the outcomes. I felt more energy, and I am healthier as a result.”

Through Matt’s leadership, employees are also working with MJFF to analyze its website and technical infrastructure to improve performance and speed. Furthermore, Matt has connected representatives of Bing with Foundation staff to help with their efforts to boost website traffic, such as search engine optimization (SEO).

Debi Brooks, MJFF co-founder and executive vice chairman, commented on how Microsoft’s support will improve the Foundation’s operations, “Getting this kind of in-kind consulting service and access to expertise can really have a big impact for us, given that technology isn’t our core business.”

Read more about Matt’s story here and download our guide on sharing a PD diagnosis at work.

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Career Openings at The Michael J. Fox Foundation

If you’re looking for a job where you can make a difference in the lives of millions and are interested in working in the New York City area, consider making The Michael J. Fox Foundation part of your career plan. We look for talented individuals with a willingness to work hard and a passion to make real change. Sound like you? Consider applying to one of the current open positions on our Careers page, including:

Publications Coordinator

The Publications Coordinator will work within the Communications team to oversee and execute the Foundation’s various publications and marketing collateral needs. This role requires project management and print production experience, and is best suited for strong writers/editors and creative problem solvers.

Associate Director Scientist, Research Programs

The development of our aggressively funded research agenda and management of our research portfolio are driven by a team and advisors with both scientific and business expertise. Within the Research Programs team, Associate Directors play an important role by working closely and in partnership with other key internal teams to drive toward our organizational objectives.

Advancement Officer

Connect directly with the Parkinson’s community and help strengthen the Foundation’s presence in the Northeast through our fundraising and educational efforts. Advancement Officers are self-starters who have strong interpersonal skills and can work independently and collaboratively as part of a team.

CRM & Analytics Director

Within the Marketing and Digital Strategies team, the CRM & Analytics Director will oversee all platforms in the Foundation’s data ecosystem and analytical activities. This role requires someone who can apply their technical and strategic skills to continuously improve the efficacy of the CRM and its impact on Foundation operations.

These are only a few of our current open positions, which also include internship opportunities. No personal connection to Parkinson’s disease is required. Check out our Careers page to learn more and apply today.

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The Michael J. Fox Foundation Remembers Patient Council Member Tom Picone

By Cheryl Blowers

Thomas A. Picone, a founding member of The Michael J. Fox Foundation Patient Council and a leader in the pharmaceutical development field, passed away in October 2015.

When Tom received a Parkinson’s diagnosis in 2006, like many, he was unsure about sharing it with others. But he realized that his experience could help advance critical connections in the drive for a cure. So he called MJFF Co-Founder and Executive Vice Chairman Deborah W. Brooks. Together, they revealed his diagnosis on stage at an industry conference with 700 colleagues, encouraging them to prioritize PD treatments and to remember patients and their loved ones as they went about this work.

Reflecting on his contributions, Deborah said, “Tom’s experience as a patient coupled with his lifelong career in the pharmaceutical industry gave him a voice that resonated with many Parkinson’s research stakeholders. He saw the possibility of our unique approach early on and he worked tirelessly to make sure that his industry colleagues and the PD community did too. That’s why he made our mission a part of his career and then took on an ambassador role — to make sure that the search for a cure included partnership and empathy.”

Throughout his professional and personal life, Tom promoted collaboration among the healthcare industry, researchers, patients and families. He held a PhD in biochemistry from University of Connecticut and rose to senior leadership in several pharmaceutical organizations. Before his retirement in 2009, he served as vice president of global strategic alliances at Schering Plough (now Merck & Co.). His guidance was instrumental to Merck becoming one of the first industry partners of Parkinson’s Progression Markers Initiative (PPMI), a landmark MJFF clinical study for the purpose of discovering and validating risk factors for Parkinson’s disease (PD) launched in 2010.

As a member of the Patient Council, he lent his expertise to translating the successes, failures and challenges of developing new treatments with patients. The council recalled how Tom often spoke about how important it was to his life, so much so that he was packed and ready three days ahead of the previous meeting. Fellow council member Dr. Soania Mathur shared her remembrance of Tom:

“Tom was not only a dedicated part of our working group but was also a friend, one who had a way of making us all feel as though we were special to him. A consummate gentleman, he was kind and thoughtful, always available to support and listen, always with a kind smile.

He was a man of intelligence, understanding the science behind the challenges this disease presents and also the logistics involved in the drug development process. His input and experience were truly helpful in directing our discussions and giving us a perspective that perhaps we had not considered. Although he faced many obstacles this diagnosis brought his way, his dedication to the Parkinson’s cause extended well beyond himself as he looked to our global community’s needs for better treatments and ultimately a cure.

I started my journey into patient advocacy with Tom and the other original members of the patient council. I had hoped that someday soon we would celebrate together a future without this disease. Instead on that day I will raise my glass to toast Tom, to his passion and perseverance, to his dedication and commitment to all of us, his Parkinson’s family.”

Source:: Fox Feed Blog

Building Community to Leave Parkinson’s Behind

I am a gala-loving girl. For a long time one of my bucket list items was to organize a spectacular event. However, when the shocking diagnosis of young-onset Parkinson’s disease (PD) was given to me in 2006, fear of the unknown set in, and a bucket list became inconceivable.

The discovery of The Michael J. Fox Foundation and Team Fox a few years later helped to rekindle this forgotten dream. Anyone who has been to a Team Fox event — whether it be a golf outing, pancake breakfast, marathon or anything else — knows exactly what I am talking about. The sense of hope, inspiration and family is undeniable. And while living in fear of Parkinson’s was exhausting, the Team Fox environment was energizing.

I decided it was time to get involved. Hello, bucket list.

In 2011, I organized the first Leave Parkinson’s Behind Gala; this past October, I hosted my fourth! Complete with a cocktail hour, dinner, dancing to the music of a fantastic band, auction and raffles, this year’s event was the biggest yet, raising more than $35,000.

As my symptoms have progressed and event planning becomes more difficult, my need to focus on PD awareness has grown strong. In the past, I always subconsciously avoided “going there” while instead riding the wave of the evening, more focused on attempting to maneuver around the dance floor in pumps.

So this year, I had a spur-of-the-moment idea. I posted on a Facebook community group page: “Is anyone experienced in making documentaries?” I briefly explained my purpose, adding, “By the way, I have no money to pay for it.”

Amazingly, I received nine responses. I also received one from a gentleman skilled in the field offering to make an attempt for such a worthwhile cause.

But it was the very first reply I received that “felt” right.

At the risk of embarrassing her daughter, a loving mom replied that she was certain her daughter Brielle would want to tackle this assignment. Filmmaking was a passion for the high school freshman. A week later, when the three of us met at a local coffee shop, the connection was immediate and Brielle’s enthusiasm to tackle this time-consuming endeavor was clear.

I did not oversee this project because I wanted Brielle to call it her own. Between the endless demands of a distinguished honor roll student, she poured her heart and soul into it. She interviewed several PD community members about their stories and combined then with key facts about PD. When it debuted at the gala, a standing ovation was received and I hugged Brielle with all the strength I had.

There is one more aspect to this story, which is the best part of all. Brielle caught the Team Fox spirit as well. As a member of her high school Key Club, she organized a “Pretzels and Pops for Parkinson’s” fundraiser. The week prior to the event, a hard-working group of students decorated and packaged more than 400 chocolate covered pretzels and pops and sold them in school. Brielle, beaming, presented me with a $642.20 check for The Michael J. Fox Foundation at the gala.

To Brielle, you are proof that our journeys through life are brightened by the acts of kindness and caring of the friends we make along the way… and that the Team Fox spirit will only grow stronger until a cure is found. Thank you to all who participated in the video, especially dear friends with Parkinson’s who shared their story as well. I’m so proud to be part of the growing Team Fox family determined to “Leave Parkinson’s Behind”.

Editor’s Note: Since it’s debut, Brielle’s short documentary (below) has garnered nearly 900 videos on YouTube and played an instrumental role at the event in sharing the stories of local community members living with Parkinson’s today.

Source:: Fox Feed Blog

Thirsty for a Cure and Giving Back

By Cheryl Blowers

If you’ve attended a Michael J Fox Foundation or Team Fox event recently, you may have sipped from a specially branded water bottle asking, “Thirsty for a cure?” Besides being a fun takeaway for MJFF guests, these branded bottles also represent the dedication of entrepreneurs and Foundation supporters Ken and Monica Churchill.

Ken and Monica head up Private Spring Water, based in California, and 3 Springs, based in Pennsylvania; both companies are suppliers of premium quality and custom labeled bottled water. The Churchills feel strongly about the importance of giving back to the community, and for Ken and his family-run business, advancing Parkinson’s research is a particularly critical cause.

Ken’s brother, Mark, has lived with Parkinson’s for many years. Ken was moved by seeing how Mark and his wife have navigated the diagnosis and the years following. So when Ken received an email mentioning MJFF, he “didn’t even have to think” before reaching out and offering to help.

Private Spring Water and 3 Springs donated more than 6,300 branded bottles this year to keep golfers, runners, volunteers and supporters hydrated at MJFF special events and Team Fox fundraisers across North America. They’ve played a starring role at events ranging from a Team Fox Young Professional polo match to the annual Delaware Pancakes for Parkinson’s and various Tour de Fox celebrations all summer long. The bottles include information about MJFF’s mission with two designs: One promotes the science at the core of MJFF’s work and the second sports a photo of Michael himself cheering on Team Fox members.

And when the bottles were first produced, Mark was thrilled when his own case of MJFF bottles arrived at his door.

The Churchill family’s commitment to speeding cutting-edge Parkinson’s goes beyond the donation. Ken and Monica’s son Austin is on full academic scholarship at University of Southern California, earning a dual Bachelor’s of Science degree in Neuroscience and Health Promotion and Disease Prevention. He also works as a research assistant in a lab that is investigating how endogenous neural stem cells adapt and repair the adult brain, with the long-term goal of seeing if these stem cells can function as a therapeutic source of neural regeneration.

Look for the MJFF branded bottles at an upcoming Team Fox Turkey Trot in Virginia and the Foundation’s signature NYC gala A Funny Thing Happened on the Way to Cure Parkinson’s.

Source:: Fox Feed Blog