UPDATE NOVEMBER 17: We're getting closer to the $5,000 goal. Many of you have been very  generous to contribute. Thank you!!  I've also spoken with many others who said they still plan to donate. I'm counting on you. It's amazing that in challenging times, giving hearts do prevail...but I guess it's not that hard to believe considering I have such exceptional family and friends like you! The support from the day Josi was born has been overwhelming, and in the season of thanks, I'm most thankful for the people in my life--those who are near and those who are far, and those who no matter the distance in time since we've seen each other or spoken there is never a distance in heart.

UPDATE OCTOBER 14:  The marathon is over and thankfully I finished. My brother and I ran the distance together. I ran for PWS; he ran for Autism. As my brother said, I "worked the crowd high-5ing spectators." It was fun and we completed 26.2 in 4 hrs 25 min. Our lovely, supportive wives and some family members and friends were cheering us on along the way. We are elated to have shared this accomplishment for such worthy causes. For those who already made a donation, thank you so very, very much. For those who have yet to make a donation, please know it is welcome at any time. We're getting closer to the $5,000 goal. Please help me get there! To every person who wished me and Josi well, my gratitude always. It keeps me going.

Thank you for visiting my marathon fundraising page! See the photo on it? That's a big part of the reason I'm still running and supporting Prader-Willi Syndrome Association (USA). This year, I'm running for the second time in the Chicago marathon which will be held on October 11, 2009 and I will be joined by my twin brother for his first marathon. This will be my sixth marathon and I anticipate that it will be as meaningful as the first. 

Josilyn "Josi," my niece, is now seven. It seems like yesterday when she was born and our family's life changed in a direction we couldn't pretend to understand. "Prader-What?" has now turned into quite literally hundreds of miles of my hitting the pavement so that nobody has to ask that question again, so that families feel hope that research is working toward a cure, so that all who are affected know that when support is needed, it's only a phone call away. I am running to support PWSA (USA) because that's what will make a tremendous impact in my niece's life so that it will be a better life with less struggle. It is not easy to live with a rare, life-threatening syndrome with many, many medical, cognitive and behavioral challenges and a hunger so unrelenting some people don't even think it could be real...they think it's made up...or just as bad, they think it can be controlled by willpower. 

"How will supporting Prader-Willi Syndrome Association (USA) help Josi directly?," you wonder. Glad you asked. PWSA (USA), a non-profit organization, is the leading entity in the country for PWS. Already in Josi's life, it has helped my family directly by providing counseling, free educational materials some of which actually were used in the ER and at many of Josi's doctor and therapy appointments, the latest on PWS research that has direct application to Josi's situation, letters to Josi's school, connections with other affected families who truly 'get it' so we, and Josi, don't feel so alone, access to medical and other experts on the syndrome, and much more. By supporting the whole family, PWSA (USA) makes Josi and those around her more knowledgeable and stronger. It allows those who care for her to be better ready to forge a path for her where she will be happy, successful, and as healthy as she can be. It allows her family to be confident advocates for her needs.

Josi is a happy girl who has a full life. She has friends, yet some kids still ridicule. She is in second grade, yet this year she started a new placement that was more aptly suited to her needs. She participates in activities, yet many are much more challenging for her than her 'typical' peers. Josi is thin by no small effort. Josi knows she has PWS, yet she remains a delightful, unjaded, beautiful child despite the incredible hard work she's given to accomplish what comes easily to others her age.

Help me 'tell' Josi that we are proud of her and that people do care. Help me show Josi by making a tax-deductible donation to PWSA (USA) that there is a reason to hope. Consider a $1, $2, or even $5 donation per mile (x 26.2 miles). Ask your employer to match it so that your donation will go further (be sure to note somewhere it is for my effort if they do match--and contact me or PWSA (USA) for help to complete the simple paperwork). Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. You may also contact me for a donation form that can be mailed.

I know it continues to be a tough year financially for many and I am grateful for as large a donation as you are able to give. If you are not able to make a contribution, I am also grateful for your prayers for my run and for Josi and for all others who have and are affected by PWS. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

To learn more about PWS, visit www.pwsausa.org.

Warmly, Ryan