Parkinson Association Events

A Stroll Through the Forest

In a different take on the standard walk-a-thon, the Parkinson Association of the Carolinas presented Team Walk for Parkinson’s Disease, a leisurely stroll through beautiful Ribbon Walk, a botanical forest in Charlotte, North Carolina. More than 125 people gathered on Saturday, October 21, to participate in the walk and enjoy a southern barbecue feast while treating their ears to blue grass music.

In recognition of the difficulties that walking can create for people with Parkinson’s, this walk did not set a goal for distance. In fact, a number of attendees opted not to walk, and instead enjoyed the atmosphere while children played soccer and football and had their faces painted. Everyone’s contribution, whether it be walking or simply attending, was demonstrated by the $10,000 that was raised to continue the Association’s work of providing support, education, referral and patient assistance.

“This is my second year coming to this event to volunteer and bringing my family and friends to support me,” said Melissa McNamee. “I was diagnosed with Parkinson’s at 21 years of age and have had it now for almost 16 years. My goal is to let people know, through this event, that I am not going to let this disease get me down, but fight till a cure is found!”

The Parkinson Association of the Carolinas, a nonprofit organization based in Charlotte, NC, recently received a $12,500 grant from the Home Instead Senior Care Foundation to implement a Respite Care Program for Parkinson’s patients and their families in the state of North Carolina.

The program, to be implemented July 1, 2004, will provide 13 families per year with in-home health care to give caregivers a break and to provide companionship for patients. “Last year, we started a caregiver support group. What we realized about this new group was that caregivers are worn out – emotionally and physically, which puts them at risk for health problems. Caregivers cannot leave a loved one due to patient dependency, there is no one to help take care of the patient or families have financial difficulty to hire someone in to help in the home,” says Debbie Huffman, Executive Director of the Association. “ If a caregiver gets sick, there is no one to take care of the patient. The Association’s Respite Care Program will help our caregivers stay healthy by helping them get out to visit old friends, make a doctor’s appointment or to just spend a day doing what they used to be able to do.”

According to Paul Hogan, founder of Home Instead Senior Care, headquartered in Omaha, Nebraska and the Foundation President, The Parkinson Association of Mecklenburg County was among these recipients because “the Association focused exclusively on Parkinson’s, a disease that generally targets older adults. Also, because
The Parkinson Association of Mecklenburg County is the only one in the area, the Board decided that this organization truly makes a difference,” according to Hogan.

The program will help economically challenged Parkinson’s families get the needed help over a period of time. The ultimate goal is to help caregivers and families reevaluate their situation at home. Individuals will have consultation about Parkinson’s, safety in the home and alternatives of living in the home, such as assisted living facilities. The Association is dedicated to providing a quality life to patients and caregivers and the Respite Care Program will help individuals maintain independence.

“Debbie Huffman and the Parkinson Association do terrific work locally. We are so very excited that Home Instead corporate recognized their future plans and direction. Many Parkinson’s patients and family caregivers will benefit,” said Les Farnum, owner of Home Instead Senior Care in Charlotte, NC.

Created in 2003, the goal of the Home Instead Senior Care Foundation is to improve the quality of life for the elderly. In April of 2004, the Foundation awarded its first grants to six organizations in the United
States, out of a pool of dozens of applicants. The grant was announced in April at Home Instead Senior Care’s international convention in Omaha, Nebraska.

Support for Today Cure for Tomorrow Educational Fundraiser a Success

On April 24, 2003, one-hundred individuals from the community joined the Parkinson Association for lunch at the Duke Mansion in Charlotte, NC to learn about the work of the Association and how they can help to expand the organization. Attending the event were individuals with Parkinson's Disease, caregivers, family members and friends. Guest speaker was Anne Udall, Executive Director of the Lee Institute and Board member for the Parkinson Association of the Carolinas and the Parkinson's Action Network.

Ms. Udall spoke about her father, Mo Udall, who had Parkinson's Disease for 20 years. Mo Udall was a former congressman from Arizona and candidate for the Democratic nomination to the presidency in 1976. He was one of the first public figures to bring real attention to the disease.

"I watched first hand how Parkinson's Disease slowly, inexorably made his life more and more difficult. Daily routines that most of us take for granted - walking in the morning, holding a cup of coffee, combing his hair all became increasingly arduous," said Udall. "Dad's unwillingness to give up is what I remember most - his incredible courage," said Udall. "For me, personally, I learned humility and patience. Most importantly, I learned to love this man beyond his public persona and whatever other people projected on to him."

Because of her dad's struggle with Parkinson's, Ms. Udall has worked over the years with other individuals to increase attention at the federal level to make sure funding is secure for current therapies and finding a cure for Parkinson's. "We know more than we have ever know," said Udall. "We have new medical knowledge about the relationship of genetics and environmental factors, new treatments and increased attention at the federal level."

Local Parkinson's Advocates Travel To Nation's Capitol To Urge Increased Funding Commitment To Research

Local members of the Parkinson Association of the Carolinas journeyed to Washington, DC from May 13-15 and joined hundreds of Parkinson's Disease advocates from across the nation to lobby Congress for an increased federal commitment to Parkinson's research for year 2004. Debbie Huffman, Executive Director of the Parkinson Association, Ruth Hurst, Association Chair and Alice Gaines, a young-onset Parkinson patient met with Senators John Edwards and Elizabeth Dole and Representative Sue Myrick to explain how additional federal funding is needed to help scientists find a cure for this devastating disease.

Scientists believe that a cure for Parkinson's is likely in the next 10 years. They consider it the neurodegenerative disorder most likely to produce a breakthrough, if the research dollars match the research opportunity.

"We sent a powerful message to our Senators and Representatives that without adequate federal funding for Parkinson's research, a cure may be unattainable," said Debbie Huffman, Association Executive Director.

The Capitol Hill visits were made during the Parkinson's Action Network's annual Public Policy Forum, in Washington,DC, May 13-15. The forum is a unique opportunity for the Parkinson's community to come together and discuss not only the debilitating nature of Parkinson's Disease but also the urgent need for increased federal funding with Members of Congress. This money is needed to both improve treatments and find a cure. The three-day event included a scientific briefing, advocacy training sessions and meetings with Members of Congress. The forum aims to produce knowledgeable advocates for the Parkinson's community.

In March 2000, the National Institutes of Health presented Congress with the Parkinson's Disease Research Agenda, which calls for an increase of nearly $1 billion over five years for Parkinson's research. The Parkinson's Action Network is urging Congress to fully fund the Research Agenda, since the project has only received partial funding thus far.

"The Parkinson's Disease Research Agenda provides Congress with a chance to close the funding gap for Parkinson's research by using NIH's own assessment of the current scientific opportunity," said Anne Udall, Board member of the Parkinson Association of the Carolinas and the Parkinson's Action Network. "Unfortunately, the agenda has been severely under-funded by the NIH. It is critical to all who suffer from Parkinson's that Congress not let this shortfall continue."

The Parkinson Association of the Carolinas is collaborating with the Parkinson's Action Network by taking the role as North Carolina's State Advocacy Coordinator. The Association is working with other support group leaders throughout the state to educate about the importance of federal funding for Parkinson's and teaching individuals how to be a voice in their community.

Mama Ricotta's 5K Run Benefits The Parkinson Association

On Saturday, May 31 over 600 runners and walkers from around Charlotte, NC attended the Annual Mama Ricotta's 5K Run. All proceeds benefited the Association. Volunteers from the Association helped with registration, distributing race chips and helping out at the finish line. Thank you to all who came out and supported us.