Letter to Governor Perdue
Send a Card to Ryan

April 7, 2009

Friends,

I want to thank you all for participating in this grass roots patient advocacy effort. A special thanks for those who submitted input, suggestions and motivation to get this done.
Everyone who was cc in the letter was sent a fax as well.

The first hearing is tomorrow at 2:30 pm. I spoke with the Baldwin's lawyer Michael Ciochina. The charges against the family are civil (Thank G-d!) But it does not take away of the seriousness of the situation that Ryan's parents are facing. I feel more confident that the county is taking unnecessary action and does not have a leg to stand on. One of their charges is that the parents have not provided Ryan with mental health and pediatric care. And the family can prove that they are wrong.

I asked the attorney if he had any concerns about us connecting with the media and that I had also already discussed Lisa this morning and with Jerry Rice (their advocate) that the extra publicity coming from our involvement could be made to be "the additional attention that individuals who have FDP crave for and look for in this disorder". And he did mention that it is double sword, Mr. Ciochina said that it would be left to the family to decide on how much "attention" they want to generate for the case. I suggested to Lisa to maintain a low profile for the next few days and let us do the awareness by contacting the governor's office and asking others to do the same. She needs to be in a good place for the next few days Wed and Thursday when the county makes its case to the Judge. The attorney is hopeful that this Judge is a good man and is fair as well.

Please share the letter with others in your web sites ASAP. We are working on a page on ours but it will not be up today, as my assistant and I spent hours today getting this done.

Happy Passover for some of you who will be celebrating it tomorrow! I also believe that Passover is a time to be free from bondage - May we all be free from CFS and or anything else that ails us all.

We are also faxing the letter to Nelda Holder, a reporter for the Mountain Xpress in Asheville and within Buncombe County. She is following this case closely.

In Good Health and In Beauty,

Marly (Marla) Silverman
Founder
P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
255 Alhambra Circle, Suite 715, Coral Gables, Florida 33134 - Volunteer Help Line: 954-783-6771
www.pandoranet.info
Built on Hope - Strong on Advocacy - Finding a Cure through Research.