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PUW Memory Quilt is Done!

October 21st, 2014 by Helaine Isaacs, Event Director
2014 PUW Memory Quilt

2014 PUW Memory Quilt

Each year, the Parkinson’s Unity Walk has a drawing for the top 50 team captains. The winner receives a memory quilt comprised of team t-shirts from the current Walk. This year’s winner is David Lee, Team Captain of Team James Lee. The Walk has close to 500 teams and this is just a sampling of the creative team t-shirts that are worn proudly the day of the Walk. You can be in the running to win the memory quilt from the 2015 Unity Walk. All you need to do is register, get started on your fundraising and be among the top 50 team captains.

by Helaine Isaacs
Event Director

Five Reasons to Advocate on Behalf of Clinical Trial Participation

October 2nd, 2014 by Guest Blogger

A Guest Post by Jean Burnsjean.burns.200

These are the reasons I have advocated on behalf of clinical trials for the past 12 years.

1.  Without clinical trial participation, there will be no new treatments.
2.  If people with Parkinson’s disease (PD) in the past had not participated, we would not have the treatments that we do.
3.  So future family members will not have to go through this.
4.  To help all people with PD everywhere.
5.  Because it might help you.

The first trial I joined was a phase 2/3 trial of a new drug that did slow progression or even stop it – in primates. This trial became notorious. The sponsor posted its premature ending on its website declaring the trial had failed and was over. FINISHED. They told none of the stake-holders. That experience was unsettling but it did not keep me from continuing to participate in future trials.

As a result of my participation in multiple trials over the years, I (or my data) are part of significant bodies of research. Coriell Cell Repositories, NIH’s Parkinson’s Disease Data Organizing Center, PDF’s Longitudinal and Biomarker Study in PD and NINDS’ Human Genetics Repository are just a few examples of the research that have benefited from my participation.

I am now patient #3 in a clinical trial funded by the National Institute of Neurological Disorders and Stroke – A Phase 1 Open-Label Dose Escalation Safety Study of Convection Enhanced Delivery (CED) of Adeno-Associated Virus Encoding Glial Cell Line-Derived Neurotrophic Factor (AAV2-GDNF) in Subjects with Advanced Parkinson’s Disease.

This Phase I clinical trial involving gene therapy and brain surgery is why my local family doctor calls me a “risk-taker.” Even though I don’t see myself in that way, I realize I have taken risks in participating in some Phase I clinical trials. As I tell my friends and families, it’s the one after the monkey trials end. This clinical trial involves risks to its human trial participants and requires a huge commitment of time and energy.

I am committed to participating for the next 5 years, and if my math is correct, during that time I will undergo the following:

  • 3 PET scans
  • 7 MRIs
  • at least 150 vials of blood
  • 3 lumbar procedures
  • 5 psych exams
    and
  • 60+ days traveling and in clinic days at the NIH (5 hour plane rides to and from Arizona)

You may have noticed that I use the phrase “human trial participant” in this blog. I do so because I believe we should never forget that it is human beings who volunteer for these trials. We often take great risks to our health, and we do so receiving no financial remuneration. We are lucky if the costs of being part of a clinical trial are fully reimbursed, and we are even luckier if the clinical trial sponsor makes the commitment to care for human trial participants who may be injured during their clinical trial.

So far, I have not personally benefited from my participation in these clinical trials. Yet, I am certain that my participation has furthered current research and will benefit those living with PD as well as those in the future who are at risk for being diagnosed with Parkinson’s disease.

This guest post was written by Jean Burns, Recipient of the 2011 Alan Bonander Humanitarian Award and Independent Parkinson’s Advocate & Activist (IPAA). For more information about Jean Burns’ work in the Parkinson’s community, please visit the following websites www.pdplan4life.com and www.pdblogger.com.

The Importance of Participating in Clinical Trials

October 1st, 2014 by Helaine Isaacs, Event Director

Each fall, PUW’s focus is on research. This is the time of year when the foundations who receive funding from the donations raised at the Unity Walk submit their research grants for the coming year and update the grants that have been funded for the past two years. When we survey our walkers, the #1 reason they participate in the Unity Walk is their desire to raise funds for Parkinson’s research which can progress to clinical trials. This month, our featured team and one of our guest bloggers are strong advocates for clinical trials.

Cyndy Gilbertson is this month’s Parkinson’s CHAMP. She has been living with Parkinson’s disease for over 27 years. Cyndy’s first clinical trial was for Azilect, now an approved medication for the treatment of Parkinson’s disease (PD). She has just undergone surgery at the National Institute for Health as part of a trial studying gene therapy that may retard and possibly reverse the disease process.

Cyndy Gilbertson

Cyndy Gilbertson

I’ve asked Jean Burns, the 2011 recipient of the Alan Bonander Humanitarian Award and a longstanding participant in clinical trials, to share her experience by preparing a guest post entitled, Five Reasons to Advocate on Behalf of Clinical Trial Participation, for the Unity Walk blog. Jean has been participating in clinical trials for the past 12 years. Most recently, she has undergone brain surgery as part of a five year gene therapy trial conducted by the National Institute of Neurological Disorders and Stroke.

Jean Burns

Jean Burns

When I first decided to highlight the active participation of these two longstanding supporters of the Unity Walk who are also strong advocates for clinical trials, I had no idea they were currently participating in the same NIH clinical trial. Jean was #3 in the trial and Cyndy is #6. These women are courageous and their willingness to undergo surgery is extraordinary. Participation in most clinical trials do not require this level of commitment.

As research progresses into clinical trials, participants are needed to assess the effectiveness of these new potential treatments. Many trials face delays because of a lack of volunteers. We encourage those who are living with Parkinson’s disease and their loved ones to participate in clinical trials. The easiest way to find out what clinical trials you might be eligible for is to register with Fox Trial Finder. This resource was created by The Michael J. Fox Foundation for Parkinson’s Research to help increase the flow of willing participants—both people with Parkinson’s and control participants who do not have Parkinson’s—into the clinical trials that need them, accelerating the Parkinson’s drug development process. Fox Trial Finder will not only list ongoing PD clinical trials and research studies, but will match registrants to the trials that need them and are best-suited to their specific traits.

There are so many ways to get involved in advocating for the Parkinson’s community and participating in a clinical trial is one of them. If you find a clinical trial that is a match for you, please consider taking action in this way, and join members of the Parkinson’s community who are committed to doing all they can to be a part of finding a cure and new treatments for people living with Parkinson’s disease.

By Helaine Isaacs
PUW Event Director

Stepping It Up Via Fundraisers

September 29th, 2014 by Parkinson's Unity Walk Team

Capture1231While Walk Day is held every April, supporters fundraise all year long to raise dollars for life changing research.  In this newsletter, you’ll learn about the fundraisers that our teams and walkers have proven to be a success.  Check out stories about milestone celebrations, restaurant fundraisers, exercise events, and planning a local walk in your community.

Click here for our newsletter about fundraisers.

Our next edition of Stepping It Up will be about fundraisers — so don’t miss our next email update, sign up for email alerts here.

Creating a Walk in Your Local Community

September 6th, 2014 by Helaine Isaacs, Event Director

What do Alabama, Tennessee and Indiana all have in common? In each of these states, people living with Parkinson’s disease, have taken it upon themselves to create a local walk in their community to raise funds on behalf of the Unity Walk. These are not institutional undertakings. Similar to the Unity Walk in its earliest days, these are grassroots events, organized by volunteers.

Alabama-walk-for-blog-540

Did you ever leave the Parkinson’s Unity Walk in New York’s Central Park and wonder why you don’t have a Parkinson’s walk in your home town? That’s the question Jeri Boyd asked herself on her way home from the first Unity Walk she attended in 2012. She posed the question to her two friends who had traveled with her to the Walk from Birmingham, AL, while they were still on the plane ride home. Without hesitation, they were on board and the Alabama Parkinson’s Fighters Walk was born. Their walks in 2013 and 2014 and have raised over $13,000 and $17,000 in those  years respectively. 100% of the funds raised by their team have been donated to the Unity Walk and a number of their team mates continue to travel to the Walk in New York each year.

PK-Hope-is-Alive-for-web-54

Karen Sampsell, of PK Hope is Alive is one of the Unity Walk’s strongest supporters and she has never stepped foot in Central Park. Karen started a local walk in Oak Ridge, TN as her way of participating in the Unity Walk without ever making the trip to NY. Her support group, The Parkinson’s Group of East Tennessee, sponsors their local walk and all funds raised are donated to the Unity Walk. They selected the Unity Walk as the organization they want to support because 100% of donations fund research and are distributed to seven major Parkinson’s organizations. The 3rd Annual PK Hope is Alive Walk was held in March, 2014 and raised close to $19,000.

Evansville-walk-2012-540

Karen Smith was diagnosed with Parkinson’s disease at the age of 43. She had a vision – to raise awareness of Parkinson’s disease and funds for research – and partnered with several friends to create the Stomp Out Parkinson’s Walk in Evansville, IN. The first walk was held in 2006 and the walk is now in its 9th year.

Donations made by sponsors, family, and friends have resulted in the Evansville walk’s raising over $81,000 for research for Parkinson’s disease since its inception and they’re still going strong. This year’s walk will be held on October 18th. Their walk has consistently placed them among the Unity Walk’s top 50 teams. Karen Smith has since passed the baton to others in her community. Janice McGennis, along with a walk committee, now organizes the event. This cause is deeply personal for Janice as well. Several of her family members live with Parkinson’s disease and this is her way of actively making a difference.

Fundraising walks, regardless of size, are an opportunity for members of the Parkinson’s community to gather, experience a sense of camaraderie, provide resources and information, raise funds for research AND have a good time with one another. If you are thinking of creating a walk in your home town, please get in touch with us.