2015 Nonprofit of the Year!

VQFWe are thrilled and honored to announce that the Vermont Quilt Festival has named the Parkinson’s Comfort Project as its 2015 Nonprofit of the Year!

“I am grateful for the Vermont Quilt Festival’s recognition of the Parkinson’s Comfort Project and our Comfort Quilt program,” founder Sonja Hakala said. “It is a great credit to all of the incredible quilters who have so generously donated their time and talent to us in the form of these wonderful quilts.”

Added Executive Director Jesse Davis, “This honor is also a deep recognition of Parkinson’s disease and the tremendous impact the Comfort Quilts have had upon those who have received them. The response of the Parkinson’s community to our efforts to distribute these amazing quilts has been joyous.”

The Vermont Quilt Festival is the oldest and one of the largest quilt festivals in New England drawing tens of thousands of visitors from across New England, northeastern New York and Québec up to Montréal.

The Vermont Quilt Festival takes place June 26th-28th, 2015 at the Champlain Valley Expo in Essex Junction, Vermont. The Parkinson’s Comfort Project will have an information booth where we will be raising awareness of Parkinson’s disease and our Comfort Quilt program.

We hope to see you at the Vermont Quilt Festival!

Be well…Jesse

Encouraging Research Trial

Researchers in Europe have just published a paper about a clinical trial they conducted to see if a treatment which does not involve carbidopa/levodopa has any efficacy. The result of their trial does offer hope.

Instead of seeking to stimulate the production of dopamine in the brain via levodopa, the researchers sought to protect the neurons which produce dopamine to begin with. Using a platelet-derived growth factor (PDGF) the researchers found in both animals with PD symptoms and the human clinical trial that dopamine levels in the brain stayed stable, and sometimes actually increased. The human trial used PET scanning to track the dopamine production in both the trial subjects and placebo group.

What’s the next step? The researchers want to learn why exactly this treatment appears to be successful. According to lead researcher Gesine Paul, “If we are to fully take advantage of the growth factor’s restorative properties we now need to better understand the underlying molecular processes.” There also need to be more clinical trials and studies with larger sample sizes than the twelve person trial whose results are the basis for Paul’s team’s paper.

This is indeed exciting news and gives reason for optimism. There is still much research to be done and everyone will be eagerly waiting for updates. You can read more about the study via our friends at the European Parkinson’s Disease Association.

Be well…Jesse

Making Parkinson’s Reportable

How many people in the United States have Parkinson’s? Ask one source and they will tell you 500,000. Another will say 1.5 million. Still others say 1 million. Why such a variance? Because the Parkinson’s census is not tracked.

Most illnesses in the United States are not “reportable” to the U.S. government for the purposes of tracking and identifying trends. Why is this a problem? It makes us lose vital information for research and better identification of causes and risks for the development of a myriad of conditions and illnesses such as Parkinson’s.

There are two pieces of legislation before the current session of Congress which would establish such databases with the Centers for Disease Control and Prevention (CDC). By making Parkinson’s and other neurological conditions reportable by healthcare providers, we would have a more accurate count of the prevalence of this disease as well as geographic breakdown and common denominators of the Parkinson’s census.

The Parkinson’s Action Network is working with partners who advocate for other neurological conditions on Capitol Hill for the passage of the proposed legislation. The director of the Parkinson’s Action Network and National Multiple Sclerosis Society co-wrote an op-ed in The Hill urging lawmakers to vote in favor of passage and President Obama’s signature into law.

You can urge your representatives to support this important legislation by calling, writing or emailing their offices. If you would like help contacting your legislators, the Parkinson’s Comfort Project is happy to help.

Be well…Jesse

Providing handmade quilts to people with Parkinsons disease