By Liz Diemer
April is Parkinson’s Awareness month — the perfect time to join The Michael J. Fox Foundation in generating support for Parkinson’s research and our relentless search for better treatments and a cure.
It takes many people to strategize, support and execute the progress we strive for. That’s why, throughout the year, MJFF is grateful for our incredible community of Team Fox members whose community fundraising efforts play an integral role in helping to push the needle towards a cure.
The passion and creativity that our members bring to engaging their networks is unmatched. That’s why, last year, we challenged our Team Fox community to channel their collective efforts to help make April a million dollar month for Parkinson’s research. With donations and event proceeds totalling over $750,000– 100 percent of which went directly to MJFF’s research programs– they came incredibly close. And this Parkinson’s Awareness Month, we’re more driven than ever to cross that goal line!
Will you join Team Fox in raising more than just awareness this month? Whether you host an event, or attend one in your area, together let’s make April a Million Dollar Month for Parkinson’s research! Here’s how you can do so:
- Start a Team Fox fundraising campaign and ask your friends, family and co-workers to “Help us raise $1 million for Parkinson’s research in the month of April.” Send an email, post to your social media accounts and help spread the word!
- Find an existing Team Fox event in your area to support. Hundreds of fundraisers are already being planned across the country, including our national fundraising initiative, Tour de Fox.
- Host your own fundraiser in your community! Team Fox can provide you with the tools, ideas and support you need to put together an event of your own this month or any time in 2016. We will also be posting ideas every day during the month of April on Facebook and twitter to motivate and inspire your own fundraising efforts.
There’s never been a better time to join Team Fox and we hope this month — and each one after — you and your community are aware of how much power you have to change the prognosis of Parkinson’s. Together, our voices can have a powerful impact: Help make April a million dollar month and bring us another step closer to a cure.
Source:: Fox Feed Blog
Delayed or wrong Parkinson’s diagnosis impacts individuals’ treatment and research toward new therapies. Investigators are working to validate biological measures of disease that could help confirm diagnosis and identify Parkinson’s earlier in the disease process.
“Biomarkers are tools to understand not only who has Parkinson’s and who doesn’t but also to track the symptoms of Parkinson’s as they progress and to understand whether a particular drug treatment is working or not,” says Samantha Hutten, PhD, MJFF senior associate director of research programs, in our latest podcast.
Join our webinar this Thursday, March 17 at 12 p.m. ET/9 a.m. PT to hear more from Dr. Hutten and other panelists on the search for a Parkinson’s diagnostic tool.
Watch archived webinars on topics from exercise and complementary medicine to stem cells and sexual dysfunction.
Source:: Fox Feed Blog
By Seth Manthey
Today’s new member moment shines a spotlight on sisters and first-time Team Fox members, Christina Dahl and Kim Olson. After their father, who lived with Parkinson’s disease (PD) for many years passed away, they sought to find a cure and honor other individuals living with PD. Christina and Kim will join Team Fox in San Diego for our first year at the 2016 Suja Rock ‘n’ Roll Marathon and Marathon. Team Fox chatted with Christina and Kim to discuss pre-race rituals, what pushes them to cross the finish and the legacy of their dad.
You, too, can put your running shoes to work in support of a cure. Join us in San Diego and run to help put an end to Parkinson’s!
Team Fox: Congrats on participating in your first event with Team Fox! What inspired you to join?
Kim: Christina and I share a passion and deep interest for helping people who have been affected by Parkinson’s disease. Our dad was amazingly compassionate and respected as a kind, caring and gentle man. Even at the end of his life he was concerned for others and his family’s well-being. I feel that by joining Team Fox, we’ll carry on his legacy of caring.
Christina: We are in awe of the people who raise money for The Michael J. Fox Foundation (MJFF) and we share in the community’s desire to find a cure for PD. Dad was an amazing man who navigated this debilitating disease with dignity for 15 years. I feel that this is the least we can do to honor those that live with this disease and to honor their selfless caregivers.
Team Fox: Is this your first race or have you ran marathons in the past?
Christina: Kim has been running for three years longer than I have and she got me involved. Now we’ve been running together for five years. We lead busy lives, so this is time that we get to spend together.
Team Fox: How do you train? And do you have any warm-up rituals?
Kim: We live a couple of hours away from each other so we train together virtually. We take pictures of the miles on our Garmin watch and share sweaty post-run selfies. Our warm-up rituals often include spending a night together in a hotel with some carb loading and magazines — things we rarely get to do in our normal day-to-day lives!
Team Fox: It’s apparent that you are eager to run this race together as a team. Why is that?
Kim: Running wasn’t a hobby that we did together. Dad was very athletic, had a love for sports and always supported all our activities. And Tina and I are six years apart. We didn’t have a lot in common growing up, but I always looked up to her. She’s been like a second mom to me.
After Dad became ill, my sister and I became a team as we supported and encouraged our parents. This brought us closer together. We continue to embrace life’s challenges and running is part of this — I often think to myself, “Dad faced Parkinson’s disease; I can do one more mile!” I know this attitude is also true for my sister.
Christina: Kim is my only sibling and now that we are both mothers, running has become our therapy. We embrace this challenge as a way to stay active and to become healthy role models for our children. Running for PD is even more of a motivator. I never thought I would be able to run a few miles, let alone 13.1. My first half marathon was tough. I would have never made it to the end without my sister by my side — much like life!
Team Fox: What advice would you give to a family wanting to get involved with Team Fox?
Kim: We’ve found that being involved with organizations like MJFF that support Parkinson’s research has helped with the mourning process — it reaffirms we aren’t alone. It’s also a way for us to honor our Dad and offer support to the entire Parkinson’s community. We are extremely happy to run with Team Fox and we know that Dad is smiling down on us with pride!
Source:: Fox Feed Blog
In this video, I review how physicians diagnose Parkinson’s disease (PD) and how The Michael J. Fox Foundation (MJFF) and others are collaborating to find a biomarker — an objective measure of disease (such as cholesterol level for heart disease) — for diagnosis. Because no Parkinson’s biomarker has been identified, doctors rely on a person’s medical history and physical examination to diagnose PD. This is part of the reason it’s important to be evaluated by a movement disorder specialist, a neurologist with extra training in Parkinson’s.
In order to identify a biomarker, MJFF launched the Parkinson’s Progression Markers Initiative (PPMI) in 2010. In this observational study, hundreds of volunteers both with and without PD are contributing data (through physical examinations, laboratory testing and brain imaging) that researchers are analyzing in search of a biomarker.
Not only would a Parkinson’s biomarker improve diagnosis, such a tool would also speed the development of new therapies by allowing researchers to more quickly test the impact of treatments on the disease process.
The “Ask the MD” series is supported by Acorda Therapeutics. While our generous sponsors make the “Ask the MD” program possible, their support does not influence MJFF’s content or perspective.
Source:: Fox Feed Blog
Team Fox members are putting their business savvy to work in order to speed a cure for Parkinson’s disease. Many members of our community are using portion of proceeds campaigns to engage their networks in supporting vital Parkinson’s disease research programs. Here are a few recent clothing-based portion of proceeds fundraisers to inspire you:
Bakdrop is an online retailer of custom socks designed by artists around the world. This month, Bakdrop is showcasing a pair of limited edition Team Fox crew socks with 25 percent of proceeds benefitting MJFF. The Team Fox crew socks will be on sale for a short period of time from March 7 to March 13 — so snag a pair while you can!
New to Team Fox in 2015, Anna Scolaro hosted a ladies lunch and shopping afternoon on February 10 at Dolce & Gabbana in London to support those living with Parkinson’s. Anna’s afternoon of shopping with friends raised $5,000 for Parkinson’s research after Dolce & Gabbana donated 10 percent of the sales made during the event!
Do you like a good throwback tee? Check out Homage and their time rewinding designs that pay tribute to pop culture, sports and Team Fox. Homage created the “OCT 21 2015” Back to the Future t-shirt as a way to give back to the Foundation. Ten percent of proceeds will be donated to MJFF and they’ve already raised more than $1,750 to date!
GracedbyGrit is a women’s fitness apparel brand that empowers their customers to host “Fit Shops” to raise proceeds for a cause of their choice. GracedbyGrit chose The Michael J. Fox Foundation as the beneficiary of their Holiday Trunk Show in Solana Beach, CA on December 3, 2015. 20 percent of proceeds from the apparel purchased that evening were donated to Team Fox!
Inspired? There are many unique ways to join in and create your own event! Check out teamfox.org for more information and to find events near you.
Source:: Fox Feed Blog
People with Parkinson’s disease (PD) may live in every corner of the country, but the care specialists trained in PD and the research studies to track disease and develop new treatments are often centralized in major cities. Technology may help overcome geographical and time constraints with “telemedicine” care visits and “teleresearch” studies.
A team led by researchers at the University of Rochester recently published a paper on delivering specialty Parkinson’s care with secure, Web-based videoconferencing. The study, called Connect.Parkinson, asked people to conduct virtual house calls with a PD specialist four times over one year.
They saw great interest with 11,734 individuals visiting the study’s website, 927 people completing interest forms, and 210 volunteers from 18 states enrolling in the study from March 2014 to June 2015. The authors wrote, “Remote enrollment in this care model is feasible but is likely affected by differential access to the Internet.”
First author Ray Dorsey, MD, MBA, says, “There is a digital divide with people of older age or with disability less likely to have access to the Internet or new technologies such as smartphones. But that divide is narrowing, and loved ones — children, friends — can be resources to help patients connect with a telemedicine visit or complete a teleresearch online study visit.”
Fox Insight Collects Data through Online Portal and Smartphone Application
Last year, The Michael J. Fox Foundation (MJFF) launched the online study Fox Insight, which asks participants — people with and without PD — to complete virtual study visits by filling out surveys and questionnaires through the www.foxinsight.org website. Patients can also contribute data through a wearable device and Fox Insight smartphone application.
“What we know about Parkinson’s disease is based on observation a few times a year in an artificial setting. We have very limited data on how people with Parkinson’s do on Saturday or Sunday and at 2:00 in the morning,” says Dr. Dorsey. “With smartphones we have more objective, sensitive data and can look at how PD affects activity levels and the impact of exercise, for example.”
Making Smartphone Study Data Available to Researchers Hastens Pace of Discovery
Dr. Dorsey also helped develop mPower, an iPhone Parkinson’s study app built by Sage Bionetworks that collects data on dexterity, balance and gait, memory and voice. Yesterday Sage announced the release to qualified researchers of millions of de-identified mPower data points and a paper in Nature Scientific Data profiling the dataset. Such access for the researcher community could mean greater discovery of trends and nuances that could point to new insights on Parkinson’s disease. Researchers can qualify and access the Parkinson’s database via Synapse, a data and analysis sharing platform.
“Data sharing grows the potential of discovery. More minds and algorithms combing through the data means more insights and trends that we can use to grow our understanding of Parkinson’s disease and to develop new treatments,” says MJFF Senior Vice President of Research Programs Mark Frasier, PhD.
The Foundation is preparing to make the Fox Insight data public, and we have a long history of sharing data from our own studies (such as the Parkinson’s Progression Markers Initiative) and encouraging analysis of available data. MJFF hosted our own Data Challenge in 2013 with publically available smartphone data.
More Parkinson’s Study Apps Join the Field
Another new app study called 100forParkinson’s asks people with PD and their loved ones to track their health data in a smartphone app for 100 days. The study is led by digital health startup uMotif with partners including Parkinson’s UK and The Cure Parkinson’s Trust. Anyone age 18 or older can participate through an Apple or Android smartphone or tablet, and data will be anonymized and used for research to learn more about Parkinson’s disease.
How Do You Choose a Smartphone Study?
With more smartphone and online studies joining the fray, how do you choose between them? Try them out and see which tests or app design you like best. The important thing with these studies is to stick with one you like. Your data becomes more valuable as you contribute over time, so using the app as much as possible (even if it’s not every day) will help researchers observe trends and gain new insights. And, hey, if you have the time and energy, enroll in more than one.
“We want to thank the participants in these studies,” says Dr. Dorsey. “We’re grateful to our patient and volunteer partners in helping us design and improve this new frontier of care and research.”
Source:: Fox Feed Blog
Parkinson’s disease motor symptoms can make personal hygiene more difficult. If symptoms like tremor and dyskinesia are getting in the way of a bright smile or trim beard, these suggestions from our community can help.
Looking for more advice? Our community also shared tips on making other daily tasks simpler for people with Parkinson’s.
1. Brush your teeth while listening to music. For some people with Parkinson’s disease, music can help calm a resting tremor or break a freezing spell. Listening to music while brushing teeth can help you get into a rhythm that makes the movement easier.
2. Invest in an electric toothbrush and shaver. While a bit pricier than manual toothbrushes, going electric can make teeth brushing much easier. Electric shavers are also simpler to use.
3. Talk to your doctor or dentist about prescription toothpaste. Parkinson’s disease medications can cause dry mouth, and one commenter said that a toothpaste his doctor recommended helps.
4. Sit while you brush or shave. Set up a mirror at chair level. Some find that balancing arms on a chair can also help with shaving as well as hair grooming and teeth brushing.
5. Find a balance between maintaining independence and asking for help if you need it. Our community reports that figuring out ways to complete a task on their own in a new way helps them stay sharp. At the same time, if you live with someone or have a caregiver, ask for help if you need it.
Source:: Fox Feed Blog
By Seth Manthey
It’s the beginning of half marathon season, when hundreds of Team Fox runners prepare to line up at the start in support of Parkinson’s research. Team Fox checks in with veteran Boston racers and first-time members Lizzy Guyton and Stephanie “Steph” Egizi, who will run the 2016 United Airlines NYC Half on Sunday, March 20. Read on to learn why they’re inspired to help speed a cure, their race day tips and the tunes that keep them moving during their weekly training runs.
Team Fox: What’s your inspiration to run the NYC Half with Team Fox?
Steph: Having motivation to run during the cold winter months is never a bad thing. And having the opportunity to be inspired by a cause that is truly near and dear to my heart has been amazing. My dad was diagnosed with Parkinson’s disease (PD) several years ago, but our family has been largely distant from the Parkinson’s community to date.
Lizzy: I’m running to support three special people in my life who are dealing with Parkinson’s, including Steph. This is the first time she has publicly discussed her dad’s diagnosis. When we announced that we were running for Team Fox, we were stunned at the immediate and overwhelming support we received from friends, family, coworkers and people we barely knew. Their generosity and kindness has motivated both of us as we train through the Boston cold.
Team Fox: What are you most looking forward to on race day?
Lizzy: Crossing the finish line, of course. I’m also excited to meet other runners on Team Fox. It’s my first time running with a team!
Steph: I’m looking forward to the entire experience — meeting more Team Fox members, jogging to the start line and ultimately finishing. I’m also looking forward to buying myself a brand new race day outfit! I’ve earned it, right?
Team Fox: What tips would you share with a first-time runner?
Lizzy: If it’s raining on race day, wear a trash bag. It might sound silly, but it was pouring rain during my first half and my friend made me put a bag on with holes in the sides for my arms. The trash bag keeps your whole core dry and you can ditch it partially through the race and have fresh clothes underneath.
Steph: I agree with Lizzy that you deserve to buy a new outfit for race day. However, do not wear brand new sneakers. I learned this hard way one year trying to be stylish and I ended up with two bloody ankles.
Team Fox: What’s your running partner style? Do you train together?
Lizzy: Even though we signed up to do this race together, Steph refuses to do training runs with me! We both love Team Fox but I train alone.
Steph: During training, I love to run alone. There’s something about Boston on a Saturday morning that is so peaceful and serene. However, I can’t imagine racing alone. Lizzy and I bicker about running together because she always abandons me (she’s faster than me!) but I cannot imagine having a different partner on race day.
Team Fox: You’re in the final stretch of your weekly long run, what three songs are going to get you to the finish?
“Post to Be” – Omarion
“My House” – Flo Rida
“Riser” – Dierks Bentley
“Drunk on Your Love” – Brett Eldredge
“Because You Love Me” – Celine Dion
“Perfect” – One Direction
Source:: Fox Feed Blog
A recent study published in Dermatologic Surgery confirmed the known association between Parkinson’s disease (PD) and melanoma, which is that having either disease increases your risk of the other. But, it went a step further to look for reasons underlying the connection. Through a literature search, researchers from the University of Minnesota found several factors related to a higher risk for PD. These included a family history of melanoma, lighter hair and skin color, and certain environmental and genetic factors.
Multiple environmental and genetic causes likely contribute to both melanoma and Parkinson’s disease. By evaluating these factors in each condition, researchers hope to gain a better understanding of not only the individual diseases but also the link between the two. Additional research is necessary and MJFF is funding several efforts in this area.
While having Parkinson’s disease increases risk of melanoma, it doesn’t guarantee it. Knowing about the association between PD and melanoma, you can be proactive and take steps to limit your risk as much as possible. about strategies to prevent and detect melanoma from Rachel Dolhun, MD, movement disorder specialist on staff at MJFF.
Find recruiting trials on Fox Trial Finder, MJFF’s online clinical trial matching tool.
Source:: Fox Feed Blog