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Five Reasons I 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.

Take Action – Find a Clinical Trial That is a Match for You

October 1st, 2014 by Helaine Isaacs, Event Director

Two of our walkers share their experience after finding clinical trials that were a fit for them

Each fall, PUW’s focus is on research. This is the time of year when the seven leading 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 as one way to take action.

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. 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.

Incorporating Parkinson’s Exercise Into Fundraisers

September 5th, 2014 by Helaine Isaacs, Event Director

Exercise is healthy for everyone and research has shown that regular exercise can make a significant difference in improving the quality of life for those living with Parkinson’s disease. What’s the best kind of exercise? It’s the exercise you’ll actually do!

A number of our walkers have decided to incorporate exercise into their fundraisers on behalf of the Unity Walk. The range of options are only limited by your interests. Here are just a few examples.

Team Rossi’s Zumbathon

Zumbathon2014web1
Vanessa MacNeal first participated in the Unity Walk in 2012, shortly after she was diagnosed with Parkinson’s disease. Encouraged by the support of her friends and family, she wanted to create a fundraiser in the fall to keep the momentum going after April’s Walk. She enjoyed Zumba and thought it might be a good idea for her fundraiser. All she had to do was ask and the response was a resounding “YES” Her friend who is a Zumba instructor agreed to lead the class, her pastor allowed her to use space in her church at no charge, and a friend lent her a professional grade sound equipment.

Vanessa wondered if anyone would come and was overjoyed when friends, family, neighbors, and friends of friends, all started coming through the door. They brought with them their generosity and their willingness to have fun. The music was pumping and people were smiling. Vanessa was proud to see so many people participating. The event was such a success that Team Rossi’s second annual Zumbathon was held the following fall and is now an annual tradition.

Debina’s Dream’s Volley for a Cure

Volley-for-a-cure-1

Put together a supportive and caring staff with a bit of a competitive spirit and you’ve got the makings for Debina’s Dream’s Volley for a Cure. When Debbie Flamini, the school secretary announced that she’d been diagnosed with Parkinson’s disease and was planning to participate in the Unity Walk, the wheels started turning. What started out as a few people suggesting a Volleyball Game Fundraiser between the 5th and 6th grade staff, quickly grew to something much bigger! When word got out, a committee was formed, and the entire staff (over 100 employees) volunteered to donate food, play volleyball and work the event. The event, held in the gym at the Hartford School in Mt. Laurel, NJ for the past three years, has become an annual tradition.

According to Debbie, “Having a fundraiser is so much more than raising money. It’s also more than raising awareness. It is the most powerful way for anyone with Parkinson’s to feel all the love and support that is likely there for you. All you have to do is ask.”

Team Kohan’s Play for Parkinson’s

Team-Kohan-web
Jeff and Denise Kohan are an integral part of their community — they still have school age children and spend much of their time taking their kids from one sports activity to the next. It occurred to them that they could create a fundraiser by partnering with the town’s baseball/softball league. With the support of the Hillsdale’s Recreation Director and President of the Baseball and Softball Association, “Play for Parkinson’s” was created! It included a 3-inning single elimination tournament for younger children and a homerun derby for the older ones. There were sponsor donations, event t-shirts, decorations on the field and lots of food followed by an event at the town swim club. Over 250 children participated!

The Kohans met so many people from their town and heard many stories of those who have been or are affected by Parkinson’s disease. Everyone was so supportive and Team Kohan’s event went a long way to raising awareness as well as raising funds for Parkinson’s research. Denise states that “Hillsdale, NJ is a small town with a big heart.” That may be the case but their level of support is a reflection of their strong connection to the Kohan family.