Tuesday, June 26, 2012

Tuesday's Tip: PDF Champions

Is there a special occasion coming up in your life? Perhaps a wedding, anniversary or birthday?

If so, make the celebration special by using it as an opportunity to fight Parkinson's. Many PDF Champions have used life's favorite moments to fundraise for the foundation. In lieu of favors consider making a donation on behalf of your guests to PDF or encourage your guests to do the same by forgoing gifts and making a donation to PDF instead. 

There is no better way to honor someone with Parkinson's disease than by donating to Parkinson's research and The Fitzmorris-Riles Family of Abita Spring, LA did just that!

Tawyna Foust Fitzmorris contacted PDF at the beginning of the year to inquire about making a donation to PDF in lieu of wedding favors for her daughter Karlin Louise Fitzmorris and soon to be son-in-law Joseph Barnes Riles' March wedding. Tawyna's father and Karlin's grandfather, Robert Lee Foust, passed away from complications from Parkinson's disease three years ago. As a close family they wanted to honor Robert on Karlin's special day. PDF donations cards were placed at each table setting and a photo montage of Robert was displayed at the reception.

Thank you and congratulations to The Fitzmorris-Riles Family for becoming PDF Champions and making a difference in the fight against Parkinson's disease. 

If you are interested in becoming a PDF Champion like The Fitzmorris-Riles Family, please visit our website or give us a call at (800) 457-6676.  PDF can provide you with donation cards to display at your wedding or party. Please click here to see an sample.

Remember: The Cure Begins With YOU!

Monday, June 25, 2012

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).

Friday, June 22, 2012

PDF Champions Friday!

Next Friday, June 29 the New York State Education Department, Queens ACCES-VR will be hosting a S.E.F.A Summer Show to benefit PDF! 

The PDF Champions concert will feature live music, dancing and a 50/50 raffle. Entertainment will be provided by featured artist Mustang Sammy with music by The New York City Rhythm and Blues Ensemble. Representatives from PDF will be making a pre-event presentation focused on Parkinson's disease, symptoms, detection, medical treatment and counseling. A PDF information table will be set up in case guests have any questions or need any educational collateral.

Here are all the concert details:

Date: Friday, June 29
Presentation Time: 12:10 PM
Concert Time: 12:30 - 3:00 PM
Location: NYC Department 3rd Floor Cafeteria
1 Lefrak City Plaza 59-17 Junction Boulevard
Corona, NY 11368

A special thank you to the New York State Education Department, Queen ACCES-VR for becoming a PDF Champion and raising funds to support Parkinson's research! If you live in the Corona area please be sure to attend this fantastic concert and support PDF.

Become a PDF Champion today and join a group of grassroots fundraisers around the US who are working in their communities to improve the lives and futures of people with Parkinson's. If you are interested in hosting your own concert or other type of PDF Champions fundraising event please contact us at (800) 923-4778 or click here to register online.

Remember: The Cure Begins With YOU!

Wednesday, June 20, 2012

Shop For A Cause: PDF Champions!

Do you shop at Macy's? If so, this is the perfect opportunity to shop 'til you drop and support PDF at the same time! 

Purchase a $5.00 savings pass through Macy's Shop for a Cause program and 100 percent of your donation will support Parkinson's research. Your savings pass can be used at any Macy's on Saturday, August 25.

You'll save 25 percent all day on regular, sale and clearance items, including home – even save on most brands usually excluded! Save 10 percent on electrics/electronics, watches, furniture, mattresses, and rugs/floor coverings. Exclusions apply. Saving pass holders are also eligible to register to win a $500 Macy's gift card.

Be sure to spread the word to your family, friends and co-workers! Click here to purchase today.

Remember The Cure Begins With YOU!

Friday, June 15, 2012

The Importance of Brain Banks for Neurological Research

Would you consider donating your brain for science?

A few years ago, Diana Barnwell wrote an article, entitled, My Last Gift.  She chronicled her decision to donate her brain … and the complicated issues that arose when making her decision. 

Studying actual human brains – donated by individuals upon their death, as a contribution to science – is a vital way to understanding neurological diseases such as Parkinson’s.  After all, the brain is the only mysterious organ that we can’t study during a person’s lifetime.

This is why it was so devastating to scientists around the world, particularly those at the Harvard-affiliated McLean Hospital, when the institutions’ brain bank suffered a freezer dysfunction last week.  The institution lost 150 brains that had been donated for research.

They say this constitutes one-third of the world’s largest collection of autism brain samples.  The brain bank also housed brains designated for Parkinson’s research.

How does brain donation work?  It varies at institutions around the country – from their requirements for donating to whom they consider eligible.  For instance, some institutions require a donor to be seen several times a year at their center, while others require just one visit.  Most times, much like any kind of organ donation, the decision to donate needs to be made well ahead of time.

For a listing of Parkinson’s brain banks in the US, browse PDF’s website, which includes our own PDF-funded brain bank at Columbia University Medical Center.

Back in 2010, Diana said her decision to donate was, “a magnificent legacy!”  Do you agree?

Friday's Tip: PDF Champions

Obtaining in-kind donation(s) for your PDF Champions event can make all the difference! In-kind donations can help increase the amount you are able to donate to Parkinson's research by keeping your expenses down.

In-kind donations are those donations that are done in goods and services rather than monetarily.

Start by brainstorming.  The easiest way is to make a list of all your PDF Champions event expenses. Take a look and see what items you could potentially have donated. Here are some examples: food, beverages, rental fees, printing, basic supplies, etc.

Identify one sponsor that you can approach.  Inside your PDF Champions Welcome Packet you will find a sample donation letter that you can use as a guide for approaching any business to donation to the Parkinson's cause. Don't be afraid to approach any type of business, whether you have a personal connect with them or not. Companies are very willing to help out in their communities, especially when they know the proceeds will be coming to a great charity like Parkinson's Disease Foundation.

Offer to promote their business in exchange for their service. Add their logo to the invitations, t-shirts or event signage. Invite them to have a presence at the event by setting up an information table. The possibilities are endless. Be sure to ask them what would be the most beneficial for their company.

Remember: The Cure Begins With YOU!

Thursday, June 14, 2012

Easing Dyskinesia: PDF-funded Research from 2007 Leads to Testing of Experimental Drug

Earlier this week, PsychoGenics Inc., announced that an experimental drug for Parkinson’s, eltoprazine, seemed to reduce dyskinesia in people with Parkinson’s in early studies.  Dyskinesias are the twisting and writhing movements that occur as PD progresses – a common side effect of the medication levodopa (Sinemet®).   

Back in 2007, it was PDF-funded researcher Manolo Carta Ph.D., along with Anders Bj√∂rklund, M.D., who performed the pre-clinical research that led to the identification of this drug.  At the time, while many researchers were looking at dopamine neurons as the culprit behind dyskinesias (through their interaction with levodopa), Dr. Carta’s proposal suggested something different – serotonin neurons.  His proposal led to a one-year research fellowship funded by PDF.

After completing his year of research with PDF funding during which he laid the foundation for this approach, he and his colleagues were able to investigate an experimental compounds that might help with dyskinesias.  With the support of other funders, they have now been able to study the effects of eltoprazine in people in this early stage trial – to see whether it is a viable drug treatment.

The study results announced earlier this week indicate positive news about eltoprazine’s potential to ease dyskinesia and possibly some non-motor symptoms of PD.

However, the drug will have to undergo rigorous testing – in additional people with Parkinson’s in phase II and phase III clinical trials – before we know if it’s safe and effective.  While we don’t yet know the fate of this drug, the results help us learn more about dyskinesias so we can find a solution in the future.

PDF believes it’s important to fund ideas like this so that scientists can have both the freedom to explore novel ideas for Parkinson’s and the time they need to gather data that can prove the promise of their ideas.  In Dr. Carta’s work, this proved to be the case. 

We believe this philosophy – funding creativity early on – will help researchers prove their case to other funders that can help them to further develop their ideas ... ultimately into new treatments and a cure for Parkinson’s. 

What are your thoughts? Do you or a loved one need a drug for dyskinesia?

Please share your thoughts below, and as always, call our HelpLine at (800) 457-6676 with any questions you or a loved one may have about Parkinson's.

Wednesday, June 6, 2012

Happy Birthday to the Original PDF Champion

Parkinson's Disease Foundation (PDF) would like to recognize the birthday of our founder and the original PDF Champion, Mr. William Black!

In 1957, Mr. Black’s, controller and close friend was diagnosed with Parkinson’s disease. Appalled to learn that no truly effective therapy was available, nor was any basic research being conducted on the disease, Mr. Black set up PDF to establish a research program aimed at finding effective drug treatment. He made two major gifts: one to Columbia University to help build the research laboratory with a floor dedicated to Parkinson’s research; the other to endow PDF.

Help PDF fulfill Mr. Black's dream of finding a cure for Parkinson's by becoming a PDF Champion today!

Turn your passion and talents into fundraising for Parkinson's disease research. Here are a few ways that you can fundraise:
  • Hold a car wash
  • Run a marathon
  • Coordinate a concert
  • Create and sell your art
  • Host a wine tasting
  • Arrange a bake sale
  • Complete a triathlon
  • Fundraise online
  • Organize a silent auction
  • Forgo holiday gifts and give to PDF
To sign up to become a PDF Champion please click here!

Remember: The Cure Beings With YOU!