On May 30^th, Gorny will start the 233 mile journey across the state of Kansas on Route 99 from the southern border with Oklahoma to the northern border with Nebraska.  His plan is to complete the 233 miles in just 5 days, looking to average 50 a day for the first 4 days so that day 5 is “just” the remaining 33.

Gorny’s wife and daughter will act as his crew, traveling along the course with him by car.  Steve says his daughter has it down to a science – knowing exactly when he’s in need of food or water.  His brother also plans to join over the weekend for a chunk of the route, along with friends who will join in for a few miles here and there.  Besides that, Steve will be on the road solo – but is always up for company if you are in the area!

To date, Gorny has raised over $23,000 on his way to his $30,000 goal.  You can support Steve and track his progress at his blog, http://runkansas.blogspot.com/

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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.”

With his parents and sister, Kim, based in the Boston area, the family got involved with the Massachusetts chapter of the American Parkinson Disease Association (APDA), and Kim became a member of their board. A year ago, Andrew, who lives in New York City with his wife, Laura, and their two young children, joined The Michael J. Fox Foundation’s (MJFF) Leadership Council. He connected with the Foundation after discovering his wife, Laura, had gone to business school with MJFF’s then-CEO Katie Hood. “MJFF is my speed,” he says. “They have a single goal, and they say, ‘Let’s find the right people to enable us to get from point A to point B.’”

Through their involvement with the ADPA, which emphasizes patient care and wellness programs, and with MJFF, which focuses on funding research, he feels his family is doing their part to “bookend” the disease. “We’ve risen to this challenge, which has made my mom really proud. There’s been a silver lining for all of us.”

Being actively engaged with a nonprofit is a new experience for Andrew, a portfolio manager at a London-based hedge fund GLG Partners. But MJFF manages to make it “cool,” he says. He’s inspired by everyone he’s met through the Foundation, especially their “unbelievable passion for finding a cure.” He also admires that MJFF is “in business to go out of business.”

“I’m proud to say I’m a part of the Fox Foundation, and I’m happy to do whatever I can on its behalf. It’s been a form of therapy for me just knowing that I can contribute something—for my mom’s sake and for everyone who’s touched by this disease. Sometimes you realize the old saying is true: When life gives you lemons, you make lemonade.”

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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.

In order to be financially fit, there are some rules to live by: You always need a budget; you always need to have some money saved; and I want you to always have some money invested. [...] For younger women especially, the experience of investing will teach valuable life lessons. You will learn the concept of risk and diversification. You may experience the pain of loss and the joy of gain. And you will learn that you can never have all your eggs in one basket.

Read the full essay at Tory’s blog. Want more of Karen’s good advice? Catch her on “Fast Money” or check out our recent post about her CNBC “Living Well” profile, where she discussed her decision to get involved with The Michael J. Fox Foundation after her mother-in-law was diagnosed with Parkinson’s.

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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.”

Here at MJFF we were particularly heartened to see the launch of alzheimers.gov, HHS’ new website offering resources and support to caregivers to help make an overwhelming and often isolating experience more manageable.

The site is a gateway to reliable, comprehensive information from federal, state, and private organizations on a range of topics. Visitors to the site will find plain language information and tools to identify local resources that can help with the challenges of daily living, emotional needs, and financial issues related to dementia. Video interviews with real family caregivers explain why information is key to successful caregiving, in their own words.

NAPA is ambitious — 2025 is only 13 years away, not a long stretch by traditional measures of therapeutic development – but based on our experience, the multidisciplinary thinking and focused research investments are steps in the right direction. What do you think about the plan and the new website? Let us know in the comments.

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Lily Safra, Michael J. Fox and Debi Brooks

Christie’s Geneva hosted a highly anticipated auction on May 14, which would exceed their pre-sale expectations by more than $11 million. In one record-setting evening, ‘Jewels For Hope: The Collection of Mrs. Lily Safra’ realized a total of almost $39 million. Even more remarkable than the sum is its destination: The Lily Safra Foundation will donate the full proceeds to 32 charitable organizations—including The Michael J. Fox Foundation for Parkinson’s Research (MJFF).

Mrs. Lily Safra said, “I am overjoyed, knowing that so many people in need around the world will benefit. Like the jewels sold tonight, these extraordinary organizations make the world a more beautiful place, and it is a great privilege to be able to support them.”

A member of the Board of Directors, Mrs. Safra is one of The Michael J. Fox Foundation’s most generous and longest standing donors, supporting MJFF individually and through The Edmond J. Safra Philanthropic Foundation. From the jewelry auction, she will personally donate $1 million to the Foundation. Thanks to the Brin Wojcicki Challenge, her gift will be matched dollar-for-dollar, making it worth $2 million toward MJFF’s efforts to speed a cure for Parkinson’s.

Read Christie’s press release here.

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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:

Genetic profiling, known as genome sequencing, already is helping researchers diagnose rare or mysterious illnesses. Other specialists use the process to tailor drug therapies for advanced cancer patients. The latest research focuses on how to use genome sequencing in basically healthy people, especially those who may have a family history of disease but no symptoms.

At such prices, some experts and health-care companies are predicting that genome sequencing will one day become common practice in doctors’ offices and hospitals as a means of guiding prevention and treatment of illnesses.

Yet others acknowledge that there are still major questions to be answered to determine if genome sequencing will, in fact, have wide-reaching applications.

Some specialists say full genetic mapping often has limited use. For diseases like diabetes and heart disease, which have many causes beyond genes, genome sequencing isn’t able to predict who will get sick. Even proponents say the clinical significance of nearly all of the millions of mutations found in a person’s DNA is still unknown.

Last month, we addressed some of these questions in the Foundation’s blog; there are still plenty of barriers to clear before genetic breakthroughs will translate into practical personalized medicine for everyday folks, in particular.  The main challenges: How do we interpret the vast amount of data culled from genome-wide sequencing, and translate these early discoveries into treatments?

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Team Sister's Fighting Parkinson's!

Tips For Parkinson’s is gearing up for it’s 7th year and you’re invited! On May 23rd, 2012 over 800 people will walk through the doors of the IAC HQ Building and raise money for Team Fox. Tips For Parkinson’s was started by Team Fox Member and Mentor Susan Bilotta in an effort to raise money and awareness for Team Fox. The event is dedicated to Susan’s mother who’s been living with Parkinson’s for over 20 years. TFP started in 2006 at local bar in New York City called Vertigo with 100 friends and family. Jump to 2012 and TFP has has become a competitive bartending event with great food and exciting auction items. Last year Tips for Parkinson’s raised over $190,000 for Team Fox!

In 6 years, TFP has raised nearly $500,000 to benefit The Michael J. Fox Foundation. This year’s event is sure to be the best yet. Advance tickets are $45 and includes one free beverage, food and a holographic athletic wristband. Auction items include a trip to Tuscany, tickets to The View, sports memorabilia and more! For more information on Tips For Parkinson’s or to volunteer, check out www.tipsforparkinsons.org

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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.   

Finding a biomarker is a complex problem, so The Fox Foundation has undertaken this large ($45 million) and widespread study (conducted at 24 sites worldwide) to bring the PD research community together on the same page. All data from PPMI is made available to those scientists who want to use it, so that they can easily adapt it into their own work.

About 120 people from the US, Australia, Austria, Germany, Italy and England came to this year’s meeting. I attended as a member of the Patient Committee, a group of approximately six people with PD who provide insight and feedback to the Recruitment Committee. This meeting gave me the opportunity to meet people in person who I have connected with over the phone and internet over the past few months.

My initial observation upon arrival was how dedicated and enthusiastic the attendees were. This was an impressive group – approximately one half of those attending were PhDs or MDs. The schedule was intense and the subject matter very technical. Even lunch hour was combined with committee meetings.

Progress so far is mainly focused on recruitment . The goal is to recruit 400 newly diagnosed Parkinson’s patients and 200 people who don’t have PD for the control group. So far, PPMI has recruited more than half of the total necessary to complete the study, and there is a particular need for newly diagnosed people with Parkinson’s. Currently, five potential biomarkers are being actively tracked by scientists. More are likely to develop as the study progresses.

All in all it was a great experience to see all these capable people, as my wife says, working for me (us).

And no, I did not get to meet Michael.

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Guests check out the auction table at the Poehlmann family's Team Fox event.

In April 2012, Team Fox member Josie Poehlmann celebrated the tenth anniversary of her event, the Annual Tom Poehlmann Benefit for Parkinson’s. Together with her sons Tom Jr. and Brian, Josie has been raising funds to honor her late husband, who had Parkinson’s disease. In the last ten years, they have raised nearly a quarter of a million dollars for Team Fox by inviting their friends and family members to McFadden’s Restaurant and Saloon in Philadelphia for an afternoon complete with live music, raffles, a silent auction and free draft beer.

This year’s event brought many obstacles, including new state gambling laws that prevented their annual (and successful) 50/50 and Chinese raffles, a torrential downpour on the day of that they were sure would affect attendance, and more. Despite all of this, about 300 people attended and they achieved their goal of raising $20,000.

We caught up with Josie to get her thoughts on this year’s event, and how things have evolved over the years. Anyone who lives in a state with strict gambling laws, take note. The Poehlmann family got creative this year when they were prohibited from having their raffles.

Team Fox: This was your 10^th annual Tom Poehlmann Benefit. How has the event grown/changed over the years? What does the event mean to you?
Josie Poehlmann: This year was our 10^th annual event in memory of my late husband, Tom. The first year was a very small venue. My son was a bartender where we held the event. It was only 9 months after Tom’s death. I think at first, it was a way to keep our minds busy and not dwell on the loss. We always held the event the last week of March. This was when Tom went in for his DBS, so it had meaning for us. As the years went on, we grew to a bigger and bigger venue. By the third year, we were holding it at the sports bar at Citizen’s Bank Park where the Philadelphia Phillies play baseball. It is centrally located, has a great layout, and plenty of parking. Our friends are so supportive that we realized we could generate a lot of funds with a silent auction. In time, we had so many items, we added a Chinese auction and 50/50 raffles.

This event means more to us each year. We know firsthand the difficulties the patients and their families face with PD. Tom was so strong and otherwise healthy. This disease brought him to his knees in six short years. Somehow we have to raise awareness so others will be able to have the support and compassion that we could not find.

TF: Do you have an event committee in place? Do you implement any fundraising strategies to keep your costs down?
JP: We talk about forming a committee each year, and then, somehow, life sets in and we are planning another one ourselves. My son Brian and his wife, Zeffi, are the wind behind this event. Brian is in the bar business and between him and my other son, Tom, there are many friends that are restaurateurs. McFadden’s gives us a great price on the alcohol and food since Brian works there. Everything else we do is donated from printing and t-shirts to $800 worth of raffle prizes. I own a hair salon and my clients have supported this raffle for all of these years. I am also blessed to have a lot of wonderful relatives, friends and employees, who brainstorm each year for new ideas and put a lot of sweat into the event.

TF: What was the most difficult part of putting together your event his year? What was the easiest part?
JP: This year we had a roadblock. The state of Pennsylvania decided to enforce gambling laws prohibiting us from conducting games of chance. We had to get creative. To replace the 50/50 raffle we bought some unusual shaped containers. We filled one with animal crackers, one with skittles and one with rubber bands. Three different people circulated the room with clipboards and their container. The point of the game was to guess how many items were in each container, and we charged a guessing fee. We had three different prizes for each, and everyone seemed to have fun with the new game.

TF: If you could do one thing differently, what would it be and why?
JP: We found out that there are people who do silent auctions as a profession. We took a chance this year and hired one. It was the easiest part of the event. We had nothing to do. He took his percentage and we made out remarkably well. I would recommend this if you have a way to check out the credibility of the vendor. He handled the setup, breakdown and check out, and we made more than he did. It was a huge success.

TF: Anything else you’d like to share?
JP: This event has become so much more than healing our sadness on the anniversary of Tom’s death. It has taken on a life of its own. I am a true spokesperson for Parkinson’s disease.  Being a caregiver for so many years, and witnessing the ups and downs of the meds and the personality changes of the afflicted, I try to help in any way I can. Even if it is just listening. We know how much MJFF has accomplished in these 10 years. There is still so much more to do, but it isn’t even about the money. Each year we meet young onset patients at our event. This fundraiser brings awareness about Parkinson’s disease. We are there to give information, to steer those afflicted in the right direction, and give our support, comfort and friendship.

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Students, faculty and friends in line for pancakes!

The students at the University of Texas at Austin (UT) are unstoppable. With more than a dozen spirit groups on campus, over 60 Greek Letter Organizations, and countless student activities, there is never a dull moment. It’s no surprise then that so many volunteered their time to make the 2^nd Annual Longhorn Pancakes for Parkinson’s event a success.

The results truly speak for themselves: over 100 student volunteers, 3,000 in attendance, and nearly $20,000 raised for Parkinson’s research. In its second year, Longhorn Pancakes again honored longtime and beloved faculty member Dr. James Vick. To show his appreciation and support, Dr. Vick—accompanied by his wife, Niki, and daughter, Stuart—mingled with students, fellow faculty members and friends for the entire duration of the event. Clearly Longhorn Pancakes will carry on a tradition of raising funds and awareness for PD that was started years ago at the University of Virginia.

We caught up with two of the volunteers who were instrumental in making the event happen, Katie Koehler and Rhonda Cox. Katie, a fourth-year at UT getting her masters in accounting, co-chaired the event, while Rhonda, the assistant director of membership and guest services at UT’s Division of Recreational Sports, served as the faculty adviser to Katie and the rest of the student volunteers. They shared their thoughts on how this year compared the last, and what they hope for the future of Longhorn Pancakes.

Team Fox: This was the second Longhorn Pancakes for Parkinson’s Event. How did it live up to your expectations?
Katie Koehler and Rhonda Cox: Our second Longhorn Pancakes for Parkinson’s (Longhorn P4P) went great! We did not raise as much money as we did last year, but that wasn’t our goal. Our true goal this year was to increase awareness and student attendance, which we did by approximately 50%!

TF: From the planning and fundraising to the actual event, did you do anything differently this year? Did you keep anything the same?
KK and RC: This year was different in that the entire event was planned and run by the students. In our first year, we received help from the Vick family and other former faculty members at The University of Texas at Austin who were invested in the cause. They assisted us by getting the word out about the event and encouraging their networks to donate. This year, our ‘steering committee’ was still there for support and advice, but we did not rely on them as much as last year. Our planning was also much more organized between the different spirit groups on campus and everyone had a different task. We also emphasized awareness through our promotional efforts and during the event with flyers, fun fact sheets, and a Team Fox representative.

TF: What was the easiest part of putting the event together? The most difficult?
KK and RC:  The easiest part of the event was putting the whole thing together. We are lucky to have a huge support system and so many invested in the cause. Within our student community, at least 30 students came together to help plan and organize the event, 100 students helped during the event and over 3,000 students actually attended. The faculty and staff also showed their support by making donations to the Foundation and attending the event. We also saw support from the Austin community and the local businesses who generously donated items for our door prize. Further, the University Co-op, Student Government and Texas Parents all provided sponsorship that helped make the event possible. Batter Blaster donated 300 cans of batter for our pancake making and American Party Rental gave us a discount on our griddle rentals. All in all, our event was possible because of the kindness of everyone involved.

The most difficult part of putting the event together was promoting it, because you can never do enough. Outside of utilizing social media, we found it difficult to retrieve news coverage and other PR. This is a big aspect of the event that we will work hard to improve next year.

TF: What did you learn the most this year? Is there anything you wish you had done differently?
KK and RC:  This year I think we all learned or rather witnessed the power of people. It is incredible what we can do when we all come together with a common purpose. In my book, Longhorn P4P will always be successful no matter how much money is raised, because it brings together so many students who would otherwise never work together, and unite us in one cause.

There is not anything I wish I would have done differently, but there are areas going forward that I know we can improve upon. Those will be our focus as we start planning our 3rd annual Pancakes for Parkinson’s in August.

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