Sunday, September 1, 2019

Parkinson's Foundation Volunteer Leadership Summit



Parkinson's Foundation Volunteer Leadership Summit

 View from my window

I have spent a great deal of this summer in upstate New York watching the grass grow, taking naps, eating big meals and generally spending time with my wife Kate and son Ocean.While there were far too many car trips, It has been wonderful!

I also attended the Parkinson's Foundation Volunteer Leadership Summit on July 24th and 25th in Hollywood Florida. I flew in on the 23rd, because flying twice in two days would be exhausting for me if I did not have PD and with PD, it is nearly impossible.  Fatigue is one of the symptoms of PD that most effects me. 

It was a wonderful resort and offered to charge me the group rate for the night of the 23rd.  Personally, I did not think that $250.00 was such a great rate for Florida in July and therefore, I spent the first night in a more affordable hotel, just down the road.  The reviews on Expedia described the experience as as, "like staying in an IKEA Catalogue..." The description was accurate, but the room was clean, quiet and across the street from the ocean.  Luckily the resort let me check in at 10am on the 24th and I had time for a quick swim in the pool and the ocean before the summit began.

People with PD have a great sense of humor (look at the drink special sign).


During the Summit, I learned about the new advances in research and a great deal about fundraising. Personally, I would have liked to hear more about how patients can assist with the development of new research, but foundations survive on fundraising so that must be the focus.

Some Helpful Fundraising Tips I Learned:
Never tell people that they are, "making a difference."
Why? It is trite and meaningless.  Think about it, we see signs everywhere informing us that we are making a difference when we reuse our towel at a hotel, recycle, return our shopping cart etc. Helping to cure Parkinson's Disease should not be described in the same way that you would thank people for not using a lid and straw when the purchase a beverage!

Personal stories should be less than 600 words and uplifting.
Of course, you want people to understand that they are helping to further an important cause. Just do it without literally boring them to tears.

Try to avoid asking and/or allowing major donors to speak at events.
Why? Well, mostly because it is boring.  Think about it, when have you attended an event and thought, "I had so much fun. I only wish there would have been more speeches..."? Instead, ask the donor to help present an award, cut a ribbon or fire the starting pistol. Give important donors something to do NOT something to say.

Get a good sound system!
Nothing you say matters if people cannot hear you!

Ask people for help not money!
Self-explanatory. Think about it.

Remember, people are not there for the food, drinks or the music.
The food and drinks could be great or terrible, but the important thing is to remind each individual of her or his personal connection to the cause. If you do this, the event is successful regardless of almost everything else.

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Me & James Beck, Ph.D., Senior Vice President, Chief Scientific Officer


Conclusion
It was nice to see some other Parkys and I learned a great deal. My Next trip with the Foundation is to London in October. I will keep you informed.

Until next time..






4 comments:

  1. As a sign of gratitude for how my husband was saved fromParkinson  , i decided to reach out to those still suffering from this.
    My husband suffered parkinson and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from parkinson, and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to  parkinson I never imagined  parkinson has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. parkinson has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .    

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  2. i was diagnosed of parkinson disease 5 years ago,i started azilect,then mirapex as the disease progressed in february last year,and i started on parkinson disease Herbal medicine from ultimate herbal home,few months into the treatment i made a significant recovery,almost all my symptoms are gone,great improvement with my movement and balance,it been a year and life has been so good for me,contact them at ultimatehealthhome@gmail.com

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  4. my dad was diagnosed with Parkinson’s disease.his symptoms were shuffling of feet,slurred speech,degradation of hand writing, horrible driving skills, right arm held at 46 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he was having trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,i recommended this www.ultimatelifeclinic.com to anyone who also needs help.

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