Hello to all you moyamoyers out there.  I just wanted to announce the upcoming formation of "The Moyamoya Foundation---Helping Hands, Caring Hearts".  This is what is commonly known as an IRS Section 501(c)(3) tax exempt charitable organization.  I have already spoken with an attorney in San Francisco, CA named Tom Wrobel.  He is sending me out his retainer tomorrow for the formation of the corporation.  My girlfriend is an attorney with the IRs who will be assisting with expediting the process through the IRS.  My accountant is also on board, and he will be filing any necessary tax returns with the IRS.  All of the initial filings will be done by Tom Wrobel, and I hope to have the letter from the IRS by our get together at my house on August 29th.  I believe that DJ and Tom Gallucci from NJ have already agreed to serve on the Board of Trustees.  The purpose of the organization is as follows:  1} to provide a vehicle where individuals or corporations can donate money and it will be considered a tax deductible charitable donation; 2) to educate the world at large about moyamoya and the devastation that it can cause to families-----it's unbelievable and incomprehensible to me that even some neurologists have not heard of moyamoya; 3) to provide funds for research and education----I am part of a special research study being performed at NY Presbyterian Hospital---the cost for 1 functional MRI alone cost $20,000.00---and I have had one on April 14rth and will probably have another sometime in September or October, after I have my 2nd surgery on June 4th-----In another post, I will explain exactly what a functional MRI is because I am just so tired tonight; and 4) most importantly, we moyamoyers have often been financially, emotionally, psychologically and medically exhausted and drained by this rare disease.  The Foundation will also be providing funds, based solely on financial need to help treat these problems.  By that, I mean that the Foundation will help with insurance issues, travel costs, accomodations costs, dire financial need when the primary breadwinner in a family is disabled due to a stroke or other health condition related to the moyamoya disease, second opinion (or first opinion) consultations with moyamoya specialists, payment of uncovered medical costs as a result of insufficient health insurance coverage, psychological help for the family and the individual in the family stricken with moyamoya to help bring sanity and joy back to the family members. etc.  We all need to be made whole again after the devastation of moyamoya strikes us or our loved ones.  So, that is all for tonight.  I get my stitches and staples out tomorrow---they are itching like crazy....And Dr. Connolly made me promise that I would rest......silly man...he doesn't know me very well.....As my beloved Nanny Speake used to say to me,  and an expression that we still use in our family to this day....Good night and God Bless.  Love and blessings to all of you. PatM

oh my god. how amazing does this sound. thank you for doing such great work.

And God bless YOU, Linda, being a survivor these four plus years.  Welcome to the board.  I don't have moyamoya . . . I am PatM's sister . . . and very proud of her, as you all can imagine!

Diane

Hey, i know i'm knew to the family here, but if i can help in any way, i am willing...i have fundraising skills, have coordinated a benefit for a little girl..and helped out with school functions.  just let me know...

Hillary

p.s.
my mom joined us here as well, she goes by nannars, her and i live together along with my 2 girls.

bump

jOE--THAT is an excellent idea....should have the 501(c)(3) up and running, I hope, by no later than the big party at my house on August 29th....hope to see you there......I have already been soliciting contributions and have contacted some local restaurants (one that has 5 in NJ and one in Manhattan) about a moyamoya community day----that means that, when anyone orders from the menu at the restaurant, or orders take out, or delivery (this restaurant happens to be a delicious Mexican restaurant---all freshly prepared food, not pre-frozen---then"THe Moyamoya Foundation---Helping Hands, Caring Hearts" would receive 20% of each bill for  the entire day or night that the event is taking place.  I have done the same thing with a local delicious Italian deli and they will probably reduce their prices by 5% on moyamoya day, and give 15% of each bill to the Foundation.  So, although we cannot accept $$$ until we get the charitable exemption letter from the IRS, these are just some ideas that you all can utilize in your hometowns to help raise $ for the foundation......and, once we are up and running, I promise that there will be no stopping us.....Good night and God Bless, Pat

I think we all know what this will mean to those MMr's not yet diagnosed.  To take on something of this size while going thru so very much is just amazing.  If there is anything I can do, please don't hesitate to ask.  I will do whatever, wherever I can.  Bless you.

Count me on anything that I can do.


Janice

Thank you all-----and I will be calling on you and counting on you for your help and support....met with the Head of Trust Division at Merrill Lynch today....excellent meeting.....will e-mail out info to all of you withing the next few days......too tired now....speaking at career day at my daughter's middle school tomorrow........so tired..........will speak to you to you all tomorrow.  Good night and God Bless. PatM

By the way, I forgot to add the definition of "philanthropy"...According to The American Heritage Dictionary, "philanthropy" is defined as follows: 1.  The effort or inclination to increase the well-being of mankind, as by charitable aid or donations; 2. Love of mankind in general; 3.  An action or institution designed to promote human  welfare.   From the Greek "philos" ---loving;  + "anthro~pos"---mankind.

From May/June 2004 issue of "Alive Now"and an article entitled "Fire by Night" by Laura Huff Hileman......."When we open ourselves to the language of dreams, we can hear God's voice; we do see the movement of God in our personal and communal lives.  It is nothing short of astounding......"

I will not be on this website for the next few days.....I need to finish the 53 question questionnaire and get it back to our attorney by the beginning of next week.  Have CT scan on May 21st, functional MRI on May 26th and 2nd EDAS surgery on June 4th.....so, I NEED TO DO THIS NOW so we can get our tax ID # and put in all of the paperwork to the IRS.....so, dear friends....until we post again........Good night and God Bless.  Patti

ok-=---so I sneaked on the post early today, as  for DJ, I say the usual  "DITTO"-----without DJ, none of this would have been possible and  we all owe our webmaster a debt of gratitude for conceiving this website..........there is a special place in heaven reserved for that man..........Love, Pat

"There is no longer Greek and Jew, circumcised and uncircumcised, barbarian, Scythian, slave and free; but Christ is all and in all." Colossians 3:11 (NRSV)


And, as for DJ especially, remember these words of Eli, who said to Samuel, "Go back to Bed; and if he calls you again, say 'Speak LORD, your servant is listening." 1 Samuel 3:9 (TEV).  DJ was called to an act of caring after a traumatic event in his life........At any moment, God may, and WILL, call all of us to such an act of caring....Be well all........God Bless us, everyone.......Love PatM

I gotta agree with ya Nanc, The Jerry DeMarzio Memorial Moyamoya Foundation---Helping Hands, CAring Hearts....." d/b/a "The Moyamoya Foundation" Wow, now that's a mouth full!! ...

Pat,
     I agree with you fully!!  He should long be remembered, and if he is the person making this all happen, his name should be associated.  Keep up the great work!  I will do whatever I can to help you out.  If you need a midwest represenative, I would be more than happy to take care of this for you.  Let me know!!