It’s Spring (complete with snow!) and a time for new things. So it seems the right time to be launching a newly designed website for The Parkinson Alliance.
Our team worked really hard on making our site easier to use, and I hope you think so too. We also took care to showcase the people who support us and help us raise the funds to do our job—fund research!
I’m proud of all the scientists and projects we’ve funded—more than $30 million in all, the Alliance together with the Unity Walk and Team Parkinson. And the fact that thousands of people now participate in our quality of life surveys—important patient-centered outcomes research that no one else is collecting in this way.
But I can’t help but feel it’s not enough. Anyone who lives with Parkinson’s as I do, or has a loved one who does, feels that. Sure, we know a lot more about the disease and its effect on our brains and bodies, how it develops and what might be the causes. And treatments—medication, surgery, speech and physical therapy—have gotten more refined. But the true breakthroughs that once seemed just over the horizon are still beyond our immediate reach. It makes me mad sometimes that this disease is so complicated!
But mostly I’m just impatient to finish what my husband Marty and I started nearly 20 years ago. So I hope you join us at the Unity Walk this April and our other events. I know together we can get the job done and end Parkinson’s.
The Parkinson Alliance is proud to sponsor the Parkinson’s Dance Program at Capital Health Medical Center–Hopewell in Pennington, New Jersey. Join in every Thursday 1:30–2:30 pm through June 15, 2017 in the 4th floor conference room, One Capital Way, Pennington, NJ. This dance class utilizes specifically designed creative movement and choreography which will help participants develop more freedom of movement, with a sense of grace, rhythm, and ease. All classes incorporate live music and is lead by professional dance instructors trained through the MARK MORRIS DANCE GROUP/DANCE FOR PD PROGRAM in Brooklyn, NY. This class can accommodate those who walk independently, need a cane, or need a wheelchair. Caregivers are encouraged to participate. While there is a suggested donation of $30 for the entire program, all are welcome.
On the third Wednesday of every month between 2–4 pm is a Parkinson’s Support Group. The first hour is focused on educating and empowering patients, their families, and caregivers through talks about PD. The second hour the group splits. Patients can share and learn from one another in one private session while family members and caregivers can do the same in a nearby room. Meetings are held in the NJ PURE Conference Rooms B and C at Capital Health Medical Center–Hopewell. Register by calling 609-537-7157 or register online at capital health.org/events. Complimentary valet parking is available at the main entrance, and refreshments are provided.
iBiology has an eye-opening video that we invite you to watch called, Neurodegenerative disease: The Coming Epidemic. In it, Dr. Gregory Petsko discusses how our population is aging and how with that comes an increase in neurodegenerative diseases, such as Parkinson’s. He makes a clear case for the need for research dollars. He also explains that while most neurodegenerative diseases “arises sporadically, about 10% has a direct genetic cause.” It is the genetic cause and how researchers are studying it that is incredibly exciting.
He introduces us to Douglas Whitney of Port Orchard, Washington whom he calls “the most interesting man in the world.” He tells us that about half of the Whitney family has died in their 40s or 50s because of a genetic mutation that causes Alzheimer’s disease. Mr. Whitney has the mutated gene. By all accounts, he too should have died from Alzheimer’s. However, at age 67 he is still alive and shows no signs of the disease. The question is why. What can researchers learn from what else Doug Whitney may have in his genetic make-up? You can watch the video below and find additional information, including more videos in the series and related articles, here .
After watching the video, you may find yourself wondering how many other Douglas Whitneys may be among us. In April 2016, The New York Times reported in an article entitled, People Who Avoided Illness Could Be Key in Treating Those Who Didn’t that “researchers searched databases containing genetic sequences from nearly 600,000 healthy adults” and discovered 13 who may hold clues “to treating others who did not escape the gene’s effects.” The excitement of those 13 was very short lived because while the participants in the databases gave their DNA, they also signed an agreement that they would remain anonymous. In short, it was back to square one.
This, however, sparked the idea for The Resilience Project which “aims to discover hidden factors that protect people from disease.” The Project is searching for people worldwide who, “according to medical textbooks, should be sick but have somehow escaped typical signs and symptoms of the disease.” For this project, anyone who agrees to have their DNA sequenced also agrees to be contacted by researchers if they have a mutated gene that should have made them ill but did not. This Project presents the opportunity to open the door to potentially life-save treatments! Currently you can sign up at The Resilience Project, and we encourage you to do so. With some luck, we may find a few genetic winners among us to help researchers pave the way to a cure.
Did you know that every time you shop at Amazon, you can help support Parkinson’s disease research? You can help by going to smile.amazon.com from your web browser and selecting The Parkinson Alliance as your favorite charitable organization.
It’s that simple! Support The Parkinson Alliance by starting your shopping at smile.amazon.com and picking us.
AmazonSmile is the same Amazon you know. This means that you’ll find the same products, same prices and same service — but you’ll have the added bonus that Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to The Parkinson Alliance.
While the donation percentage is small, our organization is a big believer in, “there’s strength in numbers!” Every donation via using AmazonSmile, adds up. There is no action too small to help us in the fight against Parkinson’s disease
If you’ve ever sat in one of our staff meetings, you would know that one of the topics we’ve always been back and forth about, is whether or not The Parkinson Alliance should start a blog. We are a very small organization doing lots of big things, so we carefully weighed the pros and cons of starting and keeping a blog. As the idea kept being brought up in our group discussions, the number of potential topics we wanted to blog about, grew! And it was only a matter of time.
So finally — here is our first post!
It has been a long time coming. And this first is only the start of many posts to come. Our aim is to blog about our work (as well as the work of other advocates we have the pleasure of working with), the inspiring people we meet along the way, and information about Parkinson’s disease that we want to share with you.
Our hope is that our blog will give you a chance to get to know our organization a little bit better. It is also our hope that while we have already learned so much about Parkinson’s disease over the years, we can continue working together to learn more! And our blog is just one more tool that we will be using to share information with you. We are the umbrella organization for Team Parkinson, the Parkinson’s Unity Walk, and dbs4pd.org – so there will be much to let you know about.
Without further ado, this post officially opens The Parkinson Alliance Blog. Enjoy reading and please feel free to comment. Your thoughts will always be welcome!
– The Parkinson Alliance
If you have stumbled upon our blog and want to learn more about our work to raise funds and awareness for research into Parkinson’s disease, please visit our website.