PAIRing up for Research: The Importance of Saying Thank You

Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson's Advocates in Research, or "PAIR" program) at Vanderbilt University Medical Center (VUMC). In an article entitled, "Events honor early patients of novel Parkinson's study," VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson's. DBS is approved by the FDA as a treatment for mid stage Parkinson's, but not for those with earlier stage PD.

We were impressed to see how VUMC thanked their volunteers, all people with Parkinson's, who made the study possible. As the article notes, their 35 volunteers did an extraordinary thing by agreeing to either undergo surgery early on in their Parkinson's or to receive standard medicines. Each person also dedicated five separate weeks of their time over the course of two years.

As with all clinical studies, we only learned new lessons about PD because of those volunteers.

Will You "PAIR Up" for Parkinson's Research? 
This story rang true with PDF because VUMC's event reflects values similar to those that drive our PAIR program.  At PDF, we believe that people with PD must be primary partners in research­ as participants, but also in other capacities,­ in order for us to speed new treatments.

The importance of saying thank you is particularly key, because of findings such as those from a 2007 CISCRP survey which say that:

• 79 percent percent of clinical study volunteers report that they never hear from the sponsor or research staff after a trial has concluded, and; 
• 83 percent of volunteers say they are never told the results of their trial

Through PAIR, we are committed to changing this statistic and to ensuring that someone says thank you.  We are doing this in part through our signature PAIR Up for PD Research forums each April that - similar to VUMC -­ publicly thank people with Parkinson's disease who have volunteered for research studies.

    Courtesy of PDF Research Advocate Carolyn Weaver, made for her fellow Research Advocates.

Most of these forums are led by one of PDF's 180 Research Advocates (all of whom have completed one of our in-person PAIR Learning Institutes) in collaboration with local researchers.

PDF Research Advocate Bob Hankin at an April 2012 PAIR Up for PD Research Forum in New York, NY.

The thank you at the forum is usually a simple public recognition along with a small token from PDF (see first and last photos).  But it's an important step in ensuring people with PD are at the front and center of research.

We applaud VUMC's efforts to communicate with their volunteers and say thank you.  

What do you think about their efforts? Will you PAIR Up?

Visit our website to learn more about getting involved with PAIR, through our upcoming training for people with Parkinson's and care partners in Oak Brook, IL or our new online course.

Protecting the People Who Test New Parkinson’s Treatments

We all want better treatments for Parkinson’s.  Tuesday’s announcement that one of PDF’s Research Centers - Rush University Medical Center, in Chicago, IL - received full accreditation from The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP) is another step in the right direction.

Fewer than 200 institutions around the country are fully or partially accredited by AAHRPP.

Before any new treatment, for PD or another condition, is approved it must first be tested in people – in clinical research studies – to ensure it is safe and effective.  The AAHRPP accreditation means that Rush is following the highest standards when it comes to protecting those people. 

As we discuss at length at trainings for PDF’s Parkinson’s Advocates in Research program, testing an experimental treatment always involves some risk – the reason a treatment is not yet available to everyone is that we don’t yet fully understand how it works. But we need to minimize those risks as much as we can and protect the rights of participants. 

AAHRP’s work is part of that progress. It tests research centers on a number of criteria to make sure the institutions are up to par.  To do its part, PDF has been involved in several initiatives, including collaboratively working on a Research Participants Bill of Rights, several pieces of which are featured in our educational booklet here.

If you would like to learn more about research studies and how you can ensure people with Parkinson’s are involved, learn more about our PAIR program or join our ongoing online course,which runs every Thursday in June (the recordings will be posted in July).

Grant Review at PDF

Today is a big day for many at PDF — it is our annual grant review. Of course, those most affected by what goes on in the big conference room will not be there. There are two groups who depend on tomorrow's outcome: the scientists who have given us their best ideas for our scientific advisors to judge and the people who live every day with Parkinson's and are counting on these great ideas to make a difference in their disease and their lives. I am confident that the team of scientists helping — members of our scientific advisory board and other experts from around the country — will select only the best science today.

All in all, nearly 25 reviewers have pitched in their time to help whittle down the 200 letters of intent to 63 full grant proposals to, now, only the top 20 or so grants. Because of time, it is these top 20 applications that will actually get discussed.

And for the second time, PDF is doing what no other PD organization in America is doing—making certain those people living with PD have a literal seat at the table and participate in the decision making process. These people, PDF's Research Advocates, part of the Parkinson's Advocates in Research program, insure what we will fund is not just the best for science's sake but for the sake of people too. Something in which we, as an organization, take great pride and you as a community should too.

Tomorrow would be difficult to organize without the obvious help of my colleagues at PDF. But equally important is the help from everyone who will not be joining me in the room — you, the Parkinson’s Community. Your generous support of allows us to do what we do every day: support research and ideas that will improve the lives and futures of people touched by Parkinson’s. Our research program would simply not be without you. Thank you.

Notes from AAN 2011 Part I: PDF News

This week the researchers and clinicians who treat Parkinson’s and a host of other neurological diseases are gathering at the annual meeting of the American Academy of Neurology in Hawaii. Here they will share new information on the science and care of Parkinson’s. PDF’s Director of Research Programs, James Beck, Ph.D., is on the ground in Hawaii and has been sending us some updates on some of the happenings at this meeting.

Here are some PDF-related highlights he has sent along:



First, AAN accepted a submission from PDF as part of its competitive poster session, which Dr. Beck has shown in the photo above. The poster talks about PDF’s PAIR program, a network of 100 research advocates who have undergone a three-day training program to become knowledgeable in the clinical research process. PDF is particularly proud to have submitted this poster, which highlights the contributions of people with Parkinson’s to the development of new therapies. Clinical research advancement – and the inclusion of people with Parkinson’s within it – has long been a PDF priority that you can read about in our Winter newsletter. To access the full poster, download it here.



Second, seven neurology fellows (pictured above) - a few of whom are supported by PDF’s sponsored clinical fellowship program in Movement Disorders at Columbia University - are in attendance in Honolulu to keep up-to-date with Parkinson’s science. These fellows are training for careers in Parkinson’s disease and other movement disorders. Stay tuned as we receive more news from the AAN meeting.

WPC: Final Thoughts

As the 2nd World Parkinson Congress comes to a close, PDF is humbled and honored to include the following closing thoughts from guest blogger and CRLI/WPC reporter, Diane G. Cook.

World Parkinson Congress: A “Tremor Safe” Zone

“Here at the World Parkinson Congress, we’re in a Tremor Safe Zone.” Those words were spoken by Davis Phinney to describe how it feels to be among thousands of others where it’s okay to have PD. No one notices the drag of foot, the slowness of step, the shakiness of hand, the softness of voice. Everyone does it! No self consciousness here!

But there’s something much more significant happening in Glasgow…it’s tangible. You can feel it in the smiles in the corridors, the instant friendships forged over a question posed of a speaker, the hug from a stranger, the expression of interest in a poster, the spontaneous gathering of people after lectures. There is a commonness of purpose and an honoring of each role in the fabric of how we will help ameliorate symptoms while working for a cure. Physicians, scientists, researchers, executives, nurses, therapists, people with Parkinson's, caregivers and the many others working to fight the devastating effects of this disease on many levels are in one conference hall … learning, exchanging views, questioning, and pushing the agenda forward.

One leaves each session in awe of the great minds at work, clear that there is a role for each one of us, stimulated by the learning, comforted by the cross fertilization of ideas, encouraged by the new partnerships and collaboration being forged, inspired by those overcoming limitations, and thankful that you somehow ended up in this special Parkinson’s disease community.

It doesn’t get any better than this! I, for one, am signed on for 2013 in Montreal and will offer my help in any way I can to make the 3rd WPC a significant step forward for the Parkinson’s community.

As I approach my last day, my focus turns to my next challenge: ”How will I translate the power of the Congress and the urgency of Now into my life back home.”

Diane

WPC Posters: More CRLI Grads Present

As we chatted about in a previous post, the 2nd World Parkinson Congress includes two poster sessions, one led by researchers about the science and care of Parkinson's and another led by Parkinson's community members who have made efforts in their community to move the cause forward.

We profiled a few of PDF's CRLI graduates yesterday and wanted to update you on some other individuals who have presented their work. Check out Israel's poster on the left and a list of others who presented during the week.

Israel Robledo
Parkinson’s Outreach. Hope For Tomorrow. Help For Today
(Robledo, I)
Israel works to educate people living with Parkinson’s in Midland, TX about clinical trials and, along with his wife Chris, he recently established a local non-profit to cover the cost of Parkinson’s medications and clinical trial participation for his neighbors in need. His poster discusses his first year of work and the lessens he has learned. Israel says that his participation in the WPC is not only an opportunity to talk about his work, but also to learn about the programs of others around the globe. He remarks,

“Sometimes we [people living with Parkinson’s disease] just live in our little shells because we feel that the disease is beyond us. But it’s not. We can help ourselves and others, too.”

Girija Muralidhar
The Neurowriters’ Guide To The Peripatetic Pursuit Of Parkinson’s Disease (PD): A Preview
Muralidhar, G (United States); Wittekind, P (United States); Kell, P (United States); Huseman, K (United States); Wheeler, J (United States); Brooks, L (United States); Herman, L (United States); Citron, J (United States); Willocks, P (United States); Ashford, L (United Kingdom); Cummings, R (United States)

Jean Burns
Working And Crossing National And Cultural Boundaries To Spread Parkinson’s Awareness
Capitanio, F (Spain); Burns, JE (United States); Martinez, C (United States)

Kate Kelsall and Valerie Graham
Role Of Patient Support In Shaping Expectations And Decision Making With Deep Brain Stimulation (DBS) Surgery
Klepitskaya, O; Kelsall, K; Graham, VW; McRae, CA (United States)

Jean Burns
Grassroots Effort To Make The PD Tulip The National Symbol For Parkinson’s Awareness In The United States
Burns, JE (United States)

WPC Roving Reporters: Day Two Science

The 2nd World Parkinson Congress continues its three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in to a variety of these sessions. They are reporting back what they have seen and heard….and sharing the most important messages they are hearing as people living with Parkinson’s.

Please note that this post was updated on October 5.

Kate Kelsall
Attended: Music as Pleasure and How It Can Empower You
Presenter: Concetta (Connie) Tomaino, D.A., MT-BC, LCAT, Executive Director of the Institute for Music and Neurologic Function in the Bronx, New York

"Some of the points in Connie’s presentation included:

• We all experience music, but we all feel the beat differently.
• The importance of singing songs one knows well to cue yourself (she sang “You are my ____”; the audience filled in the blank with SUNSHINE).


• The prosody (rhythm, stress and the intonation) of singing matches that of the voice.


• Songs can promote memory retrieval of past events that are associated with certain songs.


• Music and songs can help with psychological issues such as depression or fatigue.


• Choose music to move by and choose different music to lull yourself to sleep.


• People with Parkinson’s have difficulty with articulation and lack of breath support. Singing can help with these issues. She illustrated with the song “Amen," noting she was able to help her patients increase their breath support from three syllables to 19 syllables."

Learn More:
Find resources on music and PD
Watch Ms. Tomaino's video presentation from PDF 2009 educational seminar


Jackie Hunt Christensen
Attended: Non-Motor Symptoms: Sleep, Pain, and Autonomic Dysfunction

"This session gave scientific validation to symptoms that many of us with Parkinson’s disease have been experiencing for years, often without acknowledgment from our physicians. Treatments haven’t been identified for most of these problems, but having them recognized as real phenomena that Parkinson’s disease may cause for some patients is a giant step in the right direction toward better patient care.

• Sleep issues: It is estimated that 90% of people with PD will experience some sort of “sleep disturbance.” These can include reduced sleep; sleep fragmentation (waking up a lot during the night); Rapid Eye Movement (REM) Sleep Behavior Disorder (acting out our dreams, such as kicking, punching, screaming); or excessive daytime sleepiness. Some of these conditions can be worsened by PD medications.

• Pain: Two-thirds of PD patients report pain that is directly related to their PD symptoms. This pain can occur in arms, legs, back, shoulders and usually occurs on the side of the body most affected by PD. It may improve after PD drugs are begun. Some people with PD may feel pain in a situation or experience that is painless for those without Parkinson’s. Others may feel extreme pain when people without PD feel only mild discomfort.
  

• Autonomic dysfunction: The autonomic nervous system regulates “automatic” body functions. For those of us with Parkinson’s disease, autonomic dysfunction can include bladder problems; constipation; sexual dysfunction – in both women and men, excessive sweating, and sensitivity to cold."

Learn More:
Find resources for nonmotor symptoms in PD
Watch PDF's online seminar on nonmotor symptoms

WPC Roving Reporters: Day One Insights

Each day during our coverage of the 2nd World Parkinson Congress (WPC)…we ask our WPC reporters, “What’s the most interesting thing you heard today?” Here are some answers from Wednesday, September 29:

From Kate Kelsall:

"The most interesting thing that I heard/saw today was a presentation by David Iverson entitled: Genetics and Me: Patient Perspective. Background of David Iverson:

David Iverson has been a producer, writer and correspondent for public broadcasting for 30 years. Most recently, he was the writer, correspondent and co-producer/director of the February 2009 PBS Frontline documentary My Father, My Brother and Me, which explored his family’s battle with Parkinson’s disease. Iverson is based in San Francisco, where he also hosts radio and television programs for public broadcasting, including the Friday edition of Forum on KQED public radio.

The three Iverson men all have one thing in common: PD.

He offered an interesting perspective on genetic testing that I hadn't considered. While David Iverson may want to consider genetic testing for himself, his decision impacts his entire family. If he decides to proceed with the testing while his family does not want to know the results, he has to live with the burden of the tests results, good or bad, and not be able to share with his family.

Because of this, he has decided not to proceed.

Inspiring thoughts in presentation:

• It's all about balance and hope
• Hope doesn't get you out but it gets you through
• PD steals your movement and robs you of your voice
• Life is fragile
• Each of us has our own version of PD with no operating instructions
• The power of family and the promise of science
• Time is our enemy and time is our ally
• Enduring power of the human spirit
• Run with what you've got and keeping running toward tomorrow."

From Garry Ballenger:

"On the first day of the WPC, I spoke with a man at breakfast who turned out to be a neurologist from Italy. He works at a clinic in a small town in the northern part of the country. He had spotted me immediately as a person with Parkinson’s and related that he has been running an exercise program for his Parkinson’s patients, working with them three hours a day, every day, for four weeks. He has gotten good results. It fit my own view: vigorous exercise is the best thing you can do to stall the progression of PD. The more you do, the more you can do."

Learn More:

• Read PDF's most recent article on exercise and Parkinson's
• Learn more about genetics and PD

WPC Posters: CRLI Grads Present

Today kicked off the not only the 2nd World Parkinson Congress (WPC) program - e.g., presentations about the latest Parkinson’s research and care - but also the scientific and lay poster sessions.

Most scientific meetings include posters by scientists, which summarize their most recent experiments. The WPC is unique because, alongside the scientific display, it features “Living with PD” posters. These posters display efforts undertaken by people with Parkinson’s disease, care partners and voluntary organizations around the world to further the cause.

PDF is proud to report that two of its Clinical Research Learning Institute graduates (who also serve as WPC reporters) presented posters about their work in the community. Today, they stood by their posters discussing their work with people from all over the world. They both chatted with us briefly during this time. Here’s a synopsis:

Renee

Renee LeVerrier

Yoga Teacher Training for Students with Parkinson’s Disease

(LeVerrier, R.; Rork DeAngelis, T; Thomas, CA (United States))

About Renee's Poster: As Renee says, "Yoga is becoming increasingly popular among all people, and people with Parkinson’s. For me, the focus is on making sure that yoga teachers know how to work with people with Parkinson’s, because it is different." She and her co-authors identified a need in the Parkinson's community for yoga instructors knowledgeable in disease who could tailor their teaching to its special needs. In this vein, Renee created a collaborative model for health care professionals to teach yoga instructors about Parkinson's. She has already conducted two workshops and 40 instructors have been trained.

Diane

Diane G. Cook

Addressing the Needs of Newly Diagnosed PD Patients: Development of a Model Curriculum (Cook, DG; Vierck, E (United States))

About Diane's Poster: Diane's poster discusses strategies that she has used to address the needs of people newly diagnosed with PD. She has done this within her own support group, using surveys to monitor what information people are looking for and planning a formal curriculum accordingly. Several of her leading topics include nonmotor symptoms of PD. She hopes to make this curriculum a prototype that others could use. Diane says of her experience today,

“My experience in presenting is that much of the value of the conference takes place in the discussions held in front of our posters and in the booths, where common experiences are shared and cards are exchanged to continue the dialogue. There is a fierce sense of collaboration!”

Congratulations to Renee and Diane. We'll update you tomorrow on other CRLI presenters.

WPC Day One

The first day of the 2nd World Parkinson Congress has begun. Scientific sessions are already underway and we hope to have some reports for you later today.

Who else is reporting on the WPC? Several other community members, including some of our very own reporters, are blogging all week long as well. We'll post some of these blogs below and start a new WPC Blogroll at right.

Do you know of others?

• Kate: CRLI graduate Kate has a wonderful story up about how she came to the WPC.
• Jackie: CRLI graduate Jackie is already blogging about her experience at the exhibits yesterday.
• Sharon: This PDF quilter is blogging about her trip to Scotland.

Learn More:

What is the CRLI? Visit PDF's site to find out.

WPC Haiku from Renee

As we kick off the first full day of sessions of the 2nd World Parkinson Congress, we'd like to share (a bit belatedly so) a lovely Haiku emailed to us yesterday by Renee LeVerrier, as she waited for the opening ceremonies to begin

Pre-Congress Haiku

Cloudy sky, Glasgow fog
Cannot dampen spirits or
Clarity we seek

Renee is one of our WPC reporters and a graduate of PDF's Clinical Research Learning Institute. Later today, Renee is presenting a poster entitled, "Yoga Teacher Training for Students with Parkinson's Disease."

Learn More:

If you'd like to learn more about Renee and our other WPC reporters:

• Read their bios here

If you're interested in other creative works by people living with Parkinson's

• See PDF's Creativity and Parkinson's site
• Browse the Sharing Stories project

WPC Opening Ceremonies, Part I

The opening ceremonies of the 2nd World Parkinson Congress (WPC) included some inspiring and informative moments. Here are some quick highlights:

• Andrew Lees, M.D., Master of Ceremonies, opened the program and introduced the evening's speakers, including Glasgow's Lord Provost who welcomed everyone to the city.
  
  
• BBC News Presenter Jane Hill presented awards to Tony Cox and Pam Quinn, the winners of the WPC video competition. Special congratulations to Pam, a graduate of PDF's Clinical Research Learning Institute. (Watch her video!)



• Grace Griffith wowed everyone with two songs, accompanied by a guitarist. (See Grace's work on PDF's Creativity and PD site).
  
  
• Stanley Fahn, M.D., Co-Chair of the WPC and PDF's Scientific Director, discussed the history of the WPC, including the instrumental role of PDF and our Executive Director Robin Elliott in putting the first meeting together four years ago.



• Gavin Hastings, Former Rugby Captain of Scotland and the British Lions, announced that his wife Diane is living with Parkinson's and discussed his commitment to fighting it.



• PDF's on-site reporters, tell us they were especially moved by comments from Bryn Williams, who founded Wobbly Williams. (Read Bryn's full speech here).



• The next WPC will take place in 2013 in Montreal.
  

We have posted a few photos on our Flickr account and can't wait to share more as the sessions get underway tomorrow.

Bringing the WPC to You

In just five days, members of the Parkinson’s community will gather for the 2nd World Parkinson Congress in Glasgow, Scotland. Can’t make it to Scotland? PDF will bring the WPC to you.

We’ll be reporting straight from Glasgow, providing scientific updates, interviews with attendees, photos of the Parkinson’s Quilt display and more.

What do you want to know from the meeting? Give us some ideas of the topics you'd like covered.

We'll do our best to report back to you next week, with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and Clinical Research Learning Institute.

Please share your thoughts below.

• To comment or view comments: Click "Comments" or "Post a Comment" below.

Reflections on PDF's Top Ten List

Over the New Year’s holiday, I found myself reflecting on the Top Ten of 2009 – accomplishments of the Parkinson’s Disease Foundation that we thought worthy of sharing with our supporters and friends. (You can find this list on our website.)

I was happy to see that for almost every item in the “Top Ten,” the people who live with Parkinson’s – along with their loved ones, friends and health professionals – are front and center. Whether it’s a research project, a new educational program or an advocacy initiative, it is this perspective that keeps our work going.

The roles of people with Parkinson’s in PDF’s work are varied. Here are some of them – each one followed by a reference to the item(s) in the Top Ten that illustrates it.

• Wise Advisors – Item #8 on the “Top Ten” list reflects the crucial role of PDF’s People With Parkinson’s Advisory Council –a group of 13 people who advise PDF on all of its programs and whose discussions led to the development of our now most popular resource, the Parkinson’s Disease Resource List. Item #9 illustrates that it is not just the 13 voices of PPAC, but also those of the wider Parkinson's community, that have influenced PDF's programs. Over the years, many people reported to PDF about the overwhelming medical costs associated with Parkinson’s, so we responded by developing a new financial assistance program, run in collaboration with the Melvin Weinstein Parkinson’s Foundation. This program is just a small step toward addressing this need.



• Informed Consumers of Medical and Scientific Information – Items #5,#6 and #7 reflect that it is the community’s feedback on PDF’s online educational programs and publications, received via our national HelpLine (800-457-6676), that guide PDF in its decisions to develop new and relevant initiatives for the community. This keeps us “on point.”



• Crucial Cogs in the Research Wheel – Item #4 reports on the Second Clinical Research Learning Institute, in which people with PD are prepared to play leadership roles in raising awareness of clinical trials. You may see these advocates in your area, as they make their way across the country to raise awareness. As one graduate said, “Nobody is in a better position than a person with Parkinson’s to empower another person with PD and to strengthen his or her belief in the role that clinical research can play in finding treatments and a cure for PD.”



• Private Philanthropists – Items # 1 and #2 demonstrate that for every research initiative that is funded by PDF – from our regular research and Fellowship programs, to the one-time bridge grants we provided last year to several scientists whose funding was summarily terminated with the collapse of a foundation on which they had depended - every cent comes from private individuals and family foundations. Most of these folks have direct personal connections with the disease. And to all of them, we say a hearty thank you!

Of course, we can’t implement every program that’s suggested to us, but we are doing our best to ‘listen in’ and respond accordingly. We have only been able to do so with the help and feedback of those working with us.

So, here’s to the heroes of our community: the women and men who live with Parkinson’s and the loved ones who are also impacted by this disease. PDF wishes you all a good 2010 – as measured in terms of the progress we all make toward solving Parkinson’s and providing support to those who live with it so courageously. We promise to continue on in 2010 toward our goals and look forward to your feedback and participation as we do so.

Sincerely,
Robin Elliott