As I sit here, realizing that I have not made a blog entry for months (really I have been THAT busy with work, my daughter field hockey games, PD fundraisers,and life in general!!) I wanted to end the year in gratitude for all of you- my friends and family who have supported the numerous endeavors I took on this year for the benefit of Parkinson's Disease Research and Awareness!!! It was truly an amazing year of amazing events and meeting some truly amazing individuals that have changed my life! Michael J. Fox is grateful for all you have done too and sends his Thank You via YouTube!!
The first couple months were set up for training for my first attempt at the NYC Half Marathon for Team Fox in March 2012. The support from you all carried me to the finish line that day!!! (I will be making a repeat appearance this year 2013 and would love to count on your support again).
The following month, April 2012, Team Ryan's Hope showed up at NYC Central Park for the Parkinson's Unity Walk in full force!!! We had over 60 members raising awareness and funds for Parkinson's Research. We were among the Top 25 teams in fundraising this year with $11,702!!
The summer brought about more running challenges - running the Philadelphia leg of the 1000 Mile Marathon with James Mangini followed up with the Team Fox Mentors leg of The Hamptons Hundred Miler with the remarkable Sam Fox followed up by the Kelly Family's Annual River Run. These three unique quests were accomplished by three men that inspired me to do things I never dreamed of with or without my Parkinson's diagnosis. I am truly grateful for what they have brought back into my life - drive and determination.
The final third of the year was supporting our friends who hosted incredible fundraising events to raise money for The Michael J. Fox Foundation for Parkinson's Research. These individuals took the ball and ran with it! They are true heroes and inspirations to others living with Parkinson's or have someone in their life with Parkinson's. Laura and Chris Hanf - Bowl over PD; Nathan Kamp - "Ready, Set, LIVE!", and Nancy Mulhearn - "Leave Parkinson's Behind"
What a fundraising year it was!!!! Ryan's Hope raised over $20,000 for Parkinson's research this year and that does not include the funds you also helped our friends with their events that you as well generously supported!!! There was also a end of year social media fundraising effort via Facebook that I participated in that because I received over 5,000 "Likes" for my story , over $25,000 was donated to the Michael J. Fox Foundation ($5 for every like!!!)
The most important thing that this year has given me is the immense support of old and new friends. There are too many to recognize individually and I don't want to leave anyone out but if you are reading this, you are near and dear to my heart. I cannot begin to count the ways that your words of encouragement, shoulder to lean on, somebody to laugh with and cry with, and as simple as a smile - has made this journey with PD all the more bearable. We are on this road through life together and nobody should travel it alone. So be a travel guide and help each other down the path!!
Some exciting things are coming in 2013! Stay tuned.....
It is a crisp fall morning and I am sitting on my deck with a cup of coffee watching the sunrise and began to review the past year and half in my mind. It has truly been an amazing journey and humbling to have such great friends and family support me with the challenges that have come along with Parkinson's disease. In January 2011, I had started what was named " Team Ryan's Hope " for what I had thought would be a group of about a dozen people who would walk with me at the 2011 Parkinson's Unity Walk. To my surprise - we grew to over 55 individuals that raised over $16,500 to fund research for PD!!!
Ryan's Hope has now become so much more. It used to be just a team name, but now it is a motto. It is my hope , that there will be a cure for PD in my lifetime. It is my hope , that I can help raise awareness of Young Onset Parkinsons Disease. It is my hope , that I can assist those who are newly diagnosed with PD to come to grips with the diagnosis. It is my hope, that I can inspire others to live their life to the fullest extent before they lose their ability to achieve their goals. To help achieve my hopes and dreams, I aligned myself and Team Ryan's Hope with two great organizations that have similar goals and philosophies - The Parkinson's Unity Walk and Team Fox (The grassroots fundraising arm of the Michael J. Fox Foundation). These two organizations have inspired me to do things I would not have even thought of 2 years ago. And for that I am grateful!
Through this inspiration by these groups, I realized I had to pay it forward and inspire others - those diagnosed with PD and those out there who support us, To spread my reach out to as many as I could, this past summer I created a web site ( www.ryans-hope.net ) and blog ( www.blog.ryans-hope.net ). This web site is an informational site for people living with PD and those who support us. It lists up- to- date info on research and treatments, upcoming fundraising opportunities, resources for patients and families, and inspiring stories from the Parkinson community. The blog can be connected to from the web site or independently. I utilize this to occasionally highlight what is happening in the PD world or my world. You can subscribe to receive updates via email by supplying your email address in the subscribe box. You can also be kept up to date by "Liking" Team Ryan's Hope on Facebook or "Follow" Ryans_Hope on Twitter.
There are many great fundraising events this fall that members and friends of Team Ryan's Hope are hosting or participating in. These individuals are going the extra mile to raise awareness and funds for Parkinson's research!!! I am asking that if you know these people, to support them in various ways (come out and cheer them on, attend their event, or make a donation toward their fundraising.
FOR THE ATHLETES :
FOR THE PARTY PEOPLE
As for me personally, I am living my life with Parkinson's and not letting Parkinson live my life for me. I am keeping busy with work, keeping up with my daughter's busy senior year activities and college planning, and trying to get back into my running activities. Life does not slow down for people with Parkinson's - just challenges us more for the things we want to achieve, And the goal in my life is ultimately a cure for PD!! As we move closer to that goal, I will continue to be a vocal advocate for YOPD a awareness and research. As always, I appreciate all of you, for keeping my head held high and always supporting my endeavors (no matter how crazy they seem). I will keep you updated on my future events for Ryan's Hope, my current goals for 2013 are:
(1) Enter the lottery again and run the NYC Half Marathon and cut 20 mins off my time (March)
(2) Host another Comedy Show in Spring 2013 that will be bigger and better than ever! More details to follow.
(3) Run and Finish the NYC ING Marathon in November 2013 (As my buddy Sam Fox says "Run While You Can"
Well, that is the update for Ryan's Hope !!!! I graciously thank you from the bottom of my heart for all we have accomplished these past 2 years and I hope you will continue to follow the progress of Ryan's Hope and help the millions of us diagnosed with Parkinson's get to that finish line of a cure!
All The Best,
John Ryan, Founder Ryan's Hope
Website: www.ryans-hope.net Follow Ryan's Hope on Facebook and Twitter
I came across this amazing individual about a year ago when I was researching the benefits of exercise and Parkinson's disease. Well, this guy has taken that concept to a whole another level!!!
His wish is to run, walk and crawl the equivalent distance of 10 million metres (6213.71 miles) by 2014, these have included the Marathon des Sables 2010 and Europe135 and hopefully the currently planned 1400 mile run across Europe, 3000 mile trans USA, Arch to Arc, Badwater, triathlons and anything else that keeps me moving. He wants to imagine if he could raise £1 for each step he makes – that would generate £1 million for research and would represent a huge leap towards a cure.
As part of his "10 Million Metres", this Wednesday, September 5, 2012, Alex Flynn, 40, will run, cycle, kayak and swim 3,563 miles across America as well as climb Mt Whitney (14,500ft), the country’s highest mountain outside Alaska for what is being called The Trans America Challenge. Mr Flynn will run 135 miles through Death Valley in California, then cycle to Chicago, kayak across Lake Erie, cycle to New York and run across the city before swimming to Liberty Island. He said: “This is my biggest challenge yet. This is almost double the distance of every race I have done in the past three years combined and I will be doing it in 30 days. "
Those of you that know me, know that I am fascinated and inspired by these extreme athletes that take on super human challenges. Like Sam Fox and James Mangini, Alex Flynn will be pushing his body to its limits all in the name of Parkinson's research for a cure. The difference being that Alex isn't racing directly for a friend or family member that was diagnosed with Parkinson's - he is the one who has Parkinson's. He was diagnosed with Parkinson's disease in 2008 at the age of 38. Obviously, any normal person or average athlete can not even conceive the concept of racing across the United States. Just imagine doing it with your body not cooperating - your legs and arms unable to move in unison as your brain directs it to or your balance is so thrown off by a poor gait. Your muscles so rigid ,when you wake, it takes over an hour just to loosen up. The medication that you are taking causes you uncontrollable sleepiness that you can barely keep your eyes open or stay focussed on the task at hand. This is the reality of life for a person with Parkinson's which makes our day to day life so difficult. To throw in a 3,563 mile physical challenge into that mix. INSANE! But I have full confidence that Alex will complete the task and will have a big smile on his face at the finish.
"Keep Moving" is Alex's motto. And that is exactly what we ALL have to do!! It is important for those with Parkinson's disease to "keep moving" because studies have shown that consistent vigorous exercise can slow the progression of the disease. But this life lesson is not just for people with Parkinson's ..but for the entire population! This world has become very sedentary in its physical activities as well as its ability to take on challenges and initiatives. We have to stop letting the world pass us by and not try to change it for the better and live your life to the fullest. I came to this realization about a year ago when I realized Parkinson's will eventually rob me of my abilities to do things that I enjoy doing and prohibiting me from new experiences that I would want to try. We have to "keep moving" in a forward direction - just put one foot in front of the other and we will reach our finish line.
Please get out there and support Alex if he is coming through your neck of the woods. He is not from America so to have people along the path cheering him on will push him that extra mile. Obviously you can donate toward his quest as well too on his
I think this is where Michael got the idea that this could work as a sitcom. The feedback that was posted on websites and from his fans and the Parkinson's community was so positive. Parkinson's used to be a disease that was shunned and those diagnosed would shy away from public outings and social interaction. Michael has changed that for all of us and has swayed how the public views the disease. This is the reason the man is my inspiration and role model for "living" life with Parkinson's disease , not suffering from Parkinson's disease.
I have never been so excited for the launch of a TV show, but will make sure I am home each night that this airs. And Mike,if you are reading this and need a part filled on the show for "Parkie Pal" I am always available!!
This is my buddy and brother in arms against Parkinson's disease - Bob Harmon!! I met Bob H earlier this year at a Team Fox Mentor meeting in New York City and wish he had been my PD mentor from day 1 of diagnosis. This man has the most opimistic and inpiring outlook at his life and those he comes in touch with. This man is out there trying to change the world for those diagnosed and not ready to accept the "new" them. He is so passionate on showing people life doesnt end with a Parkinson's diagnosis ---simply changes and it can be for the better (as it has been for many I speak with). If you are in the Florida area, try to see one of Bob's presentations or who knows- he is so good......he may take the show on the road to inspire Parkies everywhere! HE"S GOT THIS!!
Well, this is it folks!! My personal foray into the Parkinson's community. I have been trying to figure the best way to support those I have crossed paths with over the past 2 years since my diagnosis and being that most of these friendships have been found via the web......I am going to put myself out there into cyberland and hopefully make an impact in this world.
Every challenge I have come across, I view as nothing less than a mountain that needs to be conquered!!! Since my diagnosis of Parkinson's disease, the mountains have gotten higher but my determination and optimism in conquering has never been stronger!! Sometimes the mountain may be steep and treacherous, but with the support have family, friends, and fellow Parkies.....we can conquer all!! So I hope this website and blog will be helpful and insightful and I appreciate any feedback.
Last Friday, I wanted to prove that not only could I figuratively conquer a mounain but literally as well!! So I very spontaneously headed out to hike up Mt. Tamanny at the Delaware Water Gap in NJ. 1250 feet up!! There is no stopping determined individuals!!!! And my determination to assist researchers in finding a cure for Parkinson's is even stronger!!