Pat, I owuld love to do a fund raiser at Kathleen's school next year.(we're almost done for theis year)I have never done one but,I know our school would be behind this 100%. Kathleen has touched every person in that building.She not only makes them smile everytime they see her in the halls but has become their inspiration.In fact she just won an award for "perservering".Her teacher said she just had to win this because "Kathleen could write the book on this".Just let me know what I need to do.I don't have any special "skills", but My heart is certainly in this.We seriously almost lost  our daughter to this disease (it progressed very quickly for her and she had very severe strokes)and if I can help educate or help another family I will.This disease should never take the life of anyone young or old.Kahtleen is proof that as bad as it got for her there was still hope,and I truely believe that she is alive today only becasue she was diagnosed quickly.This is not the case for far to many people.Sorry for rambling on but as you can see this disease has changed so much about our life.Thanks fro all your hard work!!!!!
Mary Grace

Just a short note to update everyone on the progress of the Moyamoya Foundation....I am speaking with our attorney tomorrow to finalize the paperwork going to the IRS....things were delayed a little bit because I was i the hospital longer than I anticipated and could not speak or write.....I hope to receive the tax exemption letter by no later than Sept.15th...the first annual meeting of the Board of Directors is Sept. 10th-13th, 2004.....The immediate good news is that a volunteer is immediately available to help people who are permanently or temporarily disabled....see the post under the Thread......HELP FOR PEOPLE WHO ARE PERMANENTLY OR TEMPORARILY DISABLED.......Also, we have registered our domain name as moyamoya.org.....the website for the foundation should be up and running by mid to late September.......any question, e-mail me at psmartinlaw@aol.com or put a post on this thread or the DISABILITY thread.....Peace...PatM

Hi Hillary and everyone-----

As I think I may have indicated previously, initially the Moyamoya Foundation will be operating out of my office in Hackensack, NJ (77Hudson Street, Hackensack, NJ 07601 201-996-1555, fax no. 201-996-1503).  We have already registered the domain name of moyamoya.org...the website should be up and running by mid to end-September....in addition to the many volunteers working for the foundation (both those with moyamoya or who have children with moyamoya, and those who friends and family who want to help), we will initially have 6 full-time employees and 5 part-time employees......Through a company called United family health Care group, we have been able to find affordable health care for full-time employees and their families at a rate of only $54.87 per month per family...If you are interested, you can go to their website at www.unitedfhg.com (the usual rate is $59.87).....this is designed for employees, individuals and families and covers medical, dental, vision, prescriptions, doctor visits, hospitalization, chiropractic, partial coverage for long term care, children's braces (partial), etc.  So, if anyone is interested, you can go to the website or call 1-800-250-9396  source code w-4277.....

I will be taking no salary as President of the Moyamoya Foundation........I have submitted the budget for all employees to our attorney and the paperwork is scheduled to be submitted to the IRS tomorrow....once it is in final form, I would be pleased to fax it to anyone who is interested, as well as the resumes and letters provided by the employees which indicate their experience....it is too much to detail in this post..

Since I am still practicing law full-time, I can not do all of the work required for fund-raising by myself.....but, I have some great volunteers and employees who are ready to go as soon as we get the tax exemption letter....I started a post regarding HELP WITH TEMPORARY OR PERMANENT DISABILITY a few days ago...Doreen Murray, who will be one of our employees, is presently volunteering her extensive experience (at no cost to the foundation until she becomes an employee in September) in dealing with state, county, municipal agencies and insurance companies on behalf of our mm family.....if you would like, you can e-mail me about how you are trying to help Connie (The Foundation intends to help Connie and I have corresponded with her directly, as has our attorney, Tom Wrobel-----we can't send provide any direct funds until we get our tax exemption letter----but we have discussed the concept of fiscal sponsorship with her)-----

so, Hillary, I am very glad that you and other members of the mm family have graciously agreed to volunteer your talents and services......I will be contacting each of you who went resumes or letters via e-mail or fax regarding fund raisers, etc.  Thanks so much for your support.......Pat

Pat, I would also like some brochures, also.  Also, anything that I would need for people that would want to contribute.  If there is anything that I can do down here in Louisiana or in the Texas or Arkansas area, I would be more t han happy to.  I am a stay at home mom and have some free time on my hands especially when school starts up again for my girls.  I don't know what it is that I  could do to help, but I would be happy to do anything that I can.  My mother works for a State Representative in Texas (R) who is also an attorney that might could help us somehow if needed.  You have my personal email if you need it.  Thanks, Laura

Just hoping you are doing well after your June surgery and wanted to send some blessings your way!

Kyle's mom, Sue

Hey Hillary, I live in Monroe.  It is about  l  and a half hours from Shreveport and about 4 hours from New Orleans.  Where are you going to be staying?  Let me know.  Maybe we can hook up somewhere. 

Hey Laura


we will be in Westlake

Hillary, I'm not sure where Westlake is.  Do you know what it is close to?  Laura

Hi Pat,

Thanks a lot of inquiring about the fiscal sponsorship issue. I asked various non-profit organizations about their experiences with sponsoring individuals. They recommend (through their own experiences and work)that the sponsoring non-profit set up a "scholarship" account for the individual. Any proceeds donated to the individual's "scholarship" would be given to that person. Donators to the scholarship, would then, be allowed the tax deduction. Is this something the organization can do? (tom g, if you read this-I will definitely get in touch with you soon, about this possibility).

As well, I am scheduled for a local newspaper interview and would be really excited if I could mention the start up of the moyamoya foundation. is this okay?

I am really interested in getting a hold of some of the foundation's literature on the MMD (pamphlets, brochures, leaflets, etc). I have been working on my own literature and would love some guidance. What are some of the main points addressed on the informational literature about moyamoya?

I have a fundraising event scheduled for July 10, I'm hoping for at least 100 people (fingers crossed), if we take good pictures, I'd love to share them with you guys. I am just so very interested about passing the work on about our disease.

Thanks again for all the help. Have a great weekend!!!

with love,
connie

Oh yes---definitely share the pictures...and all of you, have a safe and happy Fourth of July weekend....God be with you all.....lol  Pat

Thanks, Kevin for bringing this thread back to light.  I too am wondering though what the current status is.  I'm fairly new here, and since being here in May 2005, I haven't really seen/heard from "PatM."  I'll try and PM her and send her an email.....

Anybody else know the status of the Foundation?

Take care,
Shan

That's great....anything to promote awareness of MM.  Appreciate you doing most of the legwork!!

I know people who will be willing to help.

Aloha,
Jan