13 days Days, 14 hours and 36 minutes until the 2013 Boston Marathon … but who is counting??!! We still find ourselves having to pinch our arms that someone as amazing as Phil Maderia, who started “Running for Rare Disease” 6 years ago … is running on behalf of our Wylder this year. WOW. People are good. God is good. To think that Wylder, who never walked a single step, will stride through the marathon along side Phil in spirit, continuing to share his messages and leave his marks on anyone he comes into contact with … well it makes our hearts sing.
To top it off, Phil is pouring his heart and soul into raising awareness about Niemann Pick A and rare diseases with ever step he takes. So very dear to our hearts as you all know. Him and the team have actually created a specific project for this years fundraising … teaming with NORD to promote Initiative to Promote Early Diagnosis. Phil and the team share the same philosophy that Wylder taught Steven and I … that unity and community is HOPE. And by collaborating and working together we WILL make a difference. The 2013 Initiative will be to conduct a survey of rare disease patients, patient organizations and physicians,
- · To collect data to gain insight on the frequency of misdiagnosis, and the time it takes to receive an accurate diagnosis of a rare disease.
- · To help us gain the attention of the community at large and to make physicians aware that, for many people with rare diseases, getting an accurate diagnosis is still an elusive dream.
- · To provide a platform for NORD to publicize the extent of the problem and to enlist physicians to help in addressing it
- · To help gain the attention of legislators and corporations to help further drive investment into rare disease research
- · To provide basis from which decisions can be derived on how the Genzyme/NORD Initiative can be focused in 2014 and beyond
- · To link the greater rare disease community, providing clear visibility to the 6,000 rare diseases affecting more than 60 million people globally, so that no one stands in isolation
The federal government conducted a large study on this topic in the 1980s and published the 1989 report of the National Commission on Orphan Diseases. NORD replicated that study on a smaller scale in 2003. But there really has been no valid study of diagnosis since then, and it is very important for us to have current, reliable data to be able to publicize the need for more timely diagnosis.
Helllloooo!!! Isn’t this amazing. The faster the diagnosis the earlier you can begin to look for treatment and the less these little ones have to go through to get diagnosis. YEAH NORD AND PHIL!!!
How you can help Wylder Nation;
Check out the AMAZING silent Auction gifts. You do not have to live in the Boston area to appreciate and/or use all of these gifts. There is even and amazing Hollywood package and a travel vouter still up for grabs worth over $1,000 to any place you choose. Planning a summer vaca? This is a great opportunity to help an amazing cause and still get a little something something for yourselves. Check it out at http://auction.runningforrarediseases.org/ The last day for bidding is noon on Thursday, April 11 and all donations are tax deductible and going to the cause above. The outpouring of support this year has already been fantastic. They presently have near 80 items up on the Online Silent Auction and over $7,000 has been raised. Oh yeah! This is HOPE.
Phil also came up with a very fun and creative idea that is easy for all of us to help and contribute too. A $5.00 song. Here is what you do! Go to Phils’ first giving page HERE and donate $5.00. In the comment section write down a song of your choice and he will add it to his play list for his run for the BIG day. Songs that make you think of Wylder, inspirational songs … keep Phil laughing and his spirits up for the long run ahead by putting down songs that will make him LAUGH!! Let us all come together and for $5.00 each and create a melody of masterpieces Phil will never forget.
Thank you Wylder for all that you are orchestrating and reminding us all to dream BIG, because all things are possible with faith, hope and love. We know and trust that you will continue to guide us and show us all the way, while reminding us to make a difference for others always. The power of Wylder will change the World! We love and miss you little one … and you make us so proud.
My mom and I will be in Boston cheering on Phil on the side lines with our Warrior paint and WN tee’s. We cannot wait!!! If any of you will be in the area and want to join us in our support of Phil and the Rare Disease Team on the sidelines in BOSTON APril 15th please message me on FB or email me at email@example.com
13 Days and Counting
Posted by March 31, 2013 8 Commentson