:-* :-* :-* :D :D :D  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 ;) :-* :-* :-* :-* :-* :-*

Pat,
      Any help that you need, just let me know.  I will do anything that I can do to help with this cause.  I will serve anywhere you need me to serve, and work my fingers to the bone.  Just let me know.  

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

PatM~
This is my first experience on the Moyamoya board!!!
The 501c3 is a great idea.
Hope your stitches are out and you're feeling ok.
LA (Linda)

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

Pat -

This is, indeed, wonderful and God bless you for doing all this work!!  I, too, am volunteering for the board or anything else that I can do to help.  I'm also involved with the Juvenile Diabetes Research Foundation annual walk, so I have some experience with fund raising!  Again, anything I can do!

-Shari   [smiley=bow.gif] [smiley=headbanger.gif] [smiley=hug.gif]

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.

:-* :-*Thanks to you all for your help---I am in the process of completing the 53 question questionnaire....will let all of you know how you can help very soon.  Good night and God Bless.P :D

bump

PatM
Thank you so much for starting this, please let me us know when it is up and running, I would love to get it put into the government listing for charitable contributions.  This is a pamplet that military members use to make donations to charitable organizations every year.  You are an inspiration to us all.
Sincerly
Joe

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 :-*

Joe reminded me of something else that can be done.  Each year we have United Way come in to our company and solicit donations.  The donations are taken out of our paychecks on a pre-tax basis.  You can also direct your donations to go to a specific charity.  Maybe we can add this to the United Way's list?  I wouldn't know where to begin or who to contact, but it's an idea.

-Shari

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 in for any help I can provide.  
Debbie

Count me on anything that I can do.


Janice

:) Me Too !!!!

Sara

:-*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 :-*

Had an excellent meeting yesterday with Matthew W. McKean, Vice President, Private Wealth Specialist at
Merrill Lynch Trust Company, FSB
100 CAmpus Drive, 3rd Floor East
Florham Park, New Jersey 07932
973-410-2301
800-508-5685
973-3016382 fax

Matt's e-mail address is:  matthew_mckean@ml.com


If you e-mail or call Matt, and you mention that you are woking with me on The Moyamoya Foundation, a tax exempt non-profit charitable foundation, you can request that he e-mail you information regarding how the Merrill Lynch Trust Company, and specifically, the Private Family Foundation Services will be assisting the Moyamoya Foundation.

Due to the fact that I paid our attorney, Tom Wrobel of San Francisco with a small inheritance I received from a dear friend, the name of the foundation will technically be "The Jerry DeMarzio Memorial Moyamoya Foundation---Helping Hands, CAring Hearts....." d/b/a "The Moyamoya Foundation"......If it were not for the fact that Jerry loved me enough to leave me a small inheritance, due to the events of last year (see my post on the Guest Book to fully understand what I am saying), I would not be able to pay for our attorney's services to assist in setting up the Foundation.

Did you know that Americans are among the most generous people in the world?  Each year, according to Merrill Lynch, more than 70% of all Americans contribute financially to charitable organizations.  In addition, a number of individuals contribute time and talent to charitable organizations whose missions coincide with their own beliefs and values.  For manhy people, outright gifts of cash and other property (such as appreciated stock---my idea) are the vehicles chosen for their giving.  Many families and individuals are now turning to private foundations (such as the one we are setting up) as a means to accomplish their philanthropic goals.....

Some of  you may not believe this, but since I was 15 years old and read a column in the New York Daily News every day by a philanthropist (I think his name was Percy Ross, but I am just not sure), I always dreamed or becoming a philanthropist.....but I never thought that a 15 year old girl from a lower middle class, blue collar family could some day become a philanthropist....Thank you all for making my dream a reality........God Bless. Pat M [smiley=laugh.gif] [smiley=laugh.gif] :-* :-* :-*

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 :) :) :-* :-*

You forgot to add in you're definition..."DJ". I think he is the perfect example of all the above definition!

Mar

:D :-* :-* :-* :-* :-*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 :D

Pat M,
         It is really nice of you and wonderful for MM sufferers that your starting this foundation but I was wondering what you thought of maybe for one shortening the name and maybe naming it after someone who has actually has MM, thats what most foundations do or maybe just calling it "The moyamoya Foundations" even if you maybe add helping hands caring hearts. This is only a suggestion and I understand that you want to honor your friend who left the small inheritance but maybe, you seem so creative, you can come up with another way. I mean no disrespect to your friend. This is just a suggestion I don't know if anyone else would agree but I just put it out there as an idea.
                             Nancy :)

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!! [smiley=wow.gif]...[smiley=twocents.gif]

Ladies---I certainly mean no disrespect to anyone---but all checks and gifts would just be made payable to "The Moyamoya Foundation"........Jerry DeMarzio taught me the gift of philanthropy and enabled this Foundation to start........During Jerry's lifetime, I often suggested to him that he start a scholarship fund for students of the local high school who could not afford to go to college, that he start a fund for underprivileged children (this was all before I was diagnosed with Moyamoya and misdiagnosed with cerebral vasculitis---(THANK THE LORD, JERRY DID NOT LIVE LONG ENOUGH TO HAVE TO SEE ME, HIS BELOVED, GO THROUGH SUCH AGONY...)-----

Jerry's reply was always the same------"Pat, the time will come when God will tell you what type of wonderful thing YOU will create with this small inheritance"......At the time, I didn't really understand what he was saying.....now, I do.  For my own reasons and for the gift that Jerry gave to me that makes it possible for me to give to others, I MUST HAVE HIS NAME AS PART OF THIS FOUNDATION!!!!

Like I said, all gifts of cash and property will just be made payable to the Moyamoya Foundation (since there is currently no other "Moyamoya Foundation")  And, without Jerry's generosity, kindness, caring for others, etc, I could not start this foundation.  It is VERY IMPORTANT  for me to not only honor Jerry in this way, but also to keep his memory alive in my heart,  my childrens' hearts, my family's and my friends' hearts.....and to make sure that anyone who cares enough to ask, will know that Jerry planted the seed of this foundation, even before his death on June 2, 2001, at the age of 89.

By the way, I will be spending the day on June 2, 2004 (2 DAYS BEFORE MY SECOND EDAS SURGERY), praying at Jerry's gravesite for his continued love and guidance and askling God to continue to bless Jerry in death as Jerry so blessed me with the gift of his life.  Jeryy lived with me and I took care of him for the last few months of his life....and I was ever so grateful to know and love such an outstanding man, such a wonderful loving person......so, I must insist,  the name STAYS!!!!  lOVE TO YOU ALL. pAT

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!! ;)

Thank you, Tommyb, for your support-------I do need a midwest rep so I will be in touch---first , I have to finish this darn questionnaire this weekend....Love to all and God Bless.....P

PatM wrote on May 15^th, 2004 at 4:18pm:

It is VERY IMPORTANT  for me to not only honor Jerry in this way, but also to keep his memory alive in my heart,  my childrens' hearts, my family's and my friends' hearts.....and to make sure that anyone who cares enough to ask, will know that Jerry planted the seed of this foundation, even before his death on June 2, 2001, at the age of 89.

I have a couple of pictures of Jerry I'd like to put here.  DJ, can I send them to you?

Diane

I love you, Peak....thanks.......

Jerry had moyamoya?

No, Jerry did not have moyamoya........he just planted the seed in me to start this foundation.....his wife did have a massive stroke in the early !990's,  and basically became incompetent.,  and she had refused to execute an Advanced Health Care Directive and Medical Decision Power of Attorney while she was still well....the laws were a little different then....Jerry had to be appointed Guardian of her estate......and, then, when they surgically inserted a stomach feeding tube and gave her intravenous fluids which kept her alive for another 18 months, Jerry went to the nursing home EVERY SINGLE DAY to visit her, even though she was basically non-responsive....he even made sure that she was bathed properly and had her hair done once a week.......like she used to do when she was competent.......So, no, Jerry did not have moyamoya, he was simply an inspirational human being who profoundly influenced my life and the lives of my family and friends with his warm-hearted kindness, caring and generous nature.....And every day, I still miss his presence in my life.. :'(

Just wanted to post an update on the Moyamoya Foundation......just faxed 20 pages, including the questionnaire to our attorney, T. Wrobel, in San Francisco tonight at about 10:45 EST.......wanted to get it in so that we can get our tax ID # quickly and so that Tom can work on this while I am recuperating.......at first, will be operating out of my law office at 77 Hudson Street, 2nd floor, Hackensack, New Jersey, 07601 (201) 996-1555; fax (201) 996-1503 (so we can cut costs by not paying any rent as my law office will just pay the rent that I have always been paying.......I am the initial agent for service of process and I have a blank place on my sign for The Moyamoya Foundation......if anyone would like me to fax the same 20 pages to them, please e-mail me directly or post a reply on this thread----is that the right word?----and I will be happy to fax it  to you.......please be sure to include your phone number and FAX NUMBER, ok?

Also interviewed a potential full - time employee and one part-timer today.  Interviewing another on Monday at lunch time and another on Tuesday evening....... That's all for now........PatM

Just another update----interviewed another potential full time employee of the Foundation today....we spent almost 3 hours over lunch....he is GOING TO BE FABULOUS........have another interview tomorrow evening for full timer and then one at 1:00pm tomorrow for part-timer......things are really coming together.....since I will not be posting any info about the additional contacts I've made since I first thought about forming this organization, anyone who wishes to can e-mail me privately, or better yet, phone my office at 201-996-1555, and I will be happy to return your call at my very earliest convenience......or perhaps, DJ can set up some kind of backroom topic about the Foundation, that I can post on.....Let me know, DJ.......it's late...Bedtime for Bonzo...Love to all, Pat M [smiley=girlflash.gif] :-*

DJ wrote on May 2^nd, 2004 at 11:36pm:

bump

Okay, DJ, I've seen you and (I think) LisaH do this.  What's it mean?

(Am I missing something obvious?)

Diane

I am curious.  What would these part- or full-time employees of the foundation be doing?  What kind of background do they bring to the organization, and what would their/his/her job description include?

Diane
P.S. Even though I work for a not-for-profit organization, I don't know anything about how one gets started and then how it pays employees.

Diane,

"Bump" posting just brings a topic back up towards the top of the board.  So basically, when you want a subject to be read again (for whatever reasons) you "bump" it back up.   For instance, I keep bumping the "Member Map" message so that new members will know to place their pin on the map.  Otherwise, that post would just kind of get lost.

Hope I explained that reasonably?  [smiley=huh.gif]  I gotta stop posting when I'm so tired and make no sense!  [smiley=sleep.gif]

Lisa

I was just going to post the exact same question, just out of curiosity, about the employees Diane!   [smiley=laugh.gif]
Lisa

Lisa, thanks for the explanation.  I thought it might have to do with keeping the message active, but -- not being really familiar with this particular software -- I wasn't exactly sure.

Diane

I have no problem answering your questions about the full and part time employees, but do not want to post something so detailed and long without first having permission from the webmaster--------Obviously, I cannot do all of this work by myself......I already have several events plannes for fundraising in September and October and I need some help from the employees (and, of course, the many volunteers from this website and my personal friends).............also, I do not wish to create a problem because some of the people involved are semi-famous and you will recognize either their names or their good works,,,,,,,,I do believe that it is important that you all are informed,however, so when DJ gives me the "go ahead", I will post this information....I await response from the webmaster....PatM

Pat - You can always send a private message.  If you do so, I would like info on what kinds of events you have started planning, or were contemplating.  Thanks!

-Shari

Thanks Pat,

Obviously, the overall progress of The Foundation is of great interest to people and updates are more than welcome!

Perhaps the detailed info on how it is being created would serve it's purpose better via email, PM's, or a thread in the "back room"?

I would hate to see the really important information (the progress) intermingled, overshadowed or burried in the technical details of the process.

Does that make sense?

Dj----that makes sense--but, I unfortunately don't want to type the same thing over and over----and I am not computer savy enough to know how to copy or paste it....so, if you and/or my sister can explain to me how to do that and send private messages, I would be happy to do so.....Pat

Hey Pat -

You can send it to everyone that requests the info all at once.  Type up your PM, and in the "To username" field, type each username separated by a comma.  For example:

DianeMain, STrantas, PatM, DJ

-Shari

Add me to the list of people wanting more info.

can i also get some info, pat? thanks.

patM

I would like to be added to the list of information.  Maybe there is something that I can help with.

Thanks


Janice

Hi everyone---my 2nd EDAS surgery has now been moved up to JUne 3rd, I have pre-admission tests tomorrow, and more cognitive functioning tests on Wed., June 2nd........so I will try to do the private e-mailing thing after I am out of the hospital regarding the employees......and also the Board of Directors......for now, I am just too tired, and it's too complicated for me to follow...but, I promise that I will do it just as soon as the headaches from the 2nd surgery subside......Love and best wishes to you all.....for those of you who are praying people, I simply ask for your prayers for me and my family--that the 2nd surgery goes as well as the first........thanks...PatM

Good luck Pat, we will be thinking of and praying for you!

-Shari

Hi Pat

Absolutely we will be praying for you --  good luck and we will be waiting for an update.

Janice

me to...me to..please...i have been talking to my employer about a donation since i work here and my daughter has it i think i can get one from him.

Hillary

bump

Hi everyone------I am hoping that everyone who has volunteered to help the Moyamoya Foundation can send me a letter or resume detailing their skills.....whether it is fundraising or just brainstorming, or if you have ANY thoughts about raising $$$$$.........e-mail me at psmartinlaw@aol.com........Tom Gallucci and I be will working hard to raise money, and I have several full time workers, part time workers, and VOLUNTEERS......I will be delegating to employees, but WE DO NEED ALL THE HELP WE CAN GET.......My husband has already gotten the domain name, moyamoya.org-----we should have it today........

so, we need YOU-------we will persevere and raise money for families who are devasted, financially and emotionally and who don't know where to turn....we are also committed to educationing pediatricians, neurologists, radiologists, neurosurgeons, etc. I have 2 pediatricians who will be writing a article about moyamoya in children, I also have a medical editor who will edit the article for free.....We will send the completed article to many magazines, especially Parents Magazine.......They publish a Parents Magazine in the town next door to me, Park Ridge.....I already have a commitment to publish..... PLEASE get in touch with me and let me know of your special talents........And, if you personally know any editors for major magazines, please hook me up with them............ :) :) :-* :-* :-*together, we can make a difference........hope to see you on August 28th and 29th at get together in the Northeast...........we will be raising alot of money that day......God Bless, everyone.........PatM

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

:-*Hi Mary Grace and Kathleen----------We would love to do a fundraiser at Kathleen's school in the fall......We will be getting our tax exemption letter, hopefully bY Mid-September........I was delayed a bit because of my 2nd surgery........Can I have your phone number so we can discuss the event in  [smiley=sayyes.gif] [smiley=sayyes.gif]greater detail.........Your daughter is a true inspiration.........I am so happy that Kathleen got the award for persevering............You must be so proud.  Give Kathleen my love.........Bless you.. Pat :-*

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 [smiley=sayyes.gif] [smiley=sayyes.gif]

Pat,

I hope things go well with the foundation, sounds like you have things in order and are moving right along, its a great feeling to know there will be help for people out there.  I am in the process of trying to help Connie raise some money, my mom and I wanted to do something to help her out and maybe take some of the frustration away for her.

i'm curious Pat, who will be working for the foundation in the beginning, how people can send donations, and if you will have some type of brochure on the foundation that the rest of us can give out to people that want more information on the foundation before they would donate.  as I said before, I would be happy to do what I can to help out, and look forward to talking with people and meeting more of the moyamoya family

have a good day
Hillary

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 [smiley=thumb.gif]

oops---forgot to mention about the brochure....I expect to have a one page glossy brochure explaining what moyamoya is and how people can help by July 23rd (which is the date of an exclusive after hours concert party in New York City which will introduce people to the disease)......and a more detailed brochure by the time of the Get Together in the Northeast the weekend of Aug 28th and 29th......will get them to you and anyone else who is interested....Pat

P.S.I think my husband may be able to scan them or something...as everyone knows, I am not too computer savy.......

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 :)

Hey Laura

where in Louisana are you, I will be there July 9th for a couple of months before we move back to texas.  We are relocating from California

Hillary

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

Kyle's mom, Sue

Thank you, Sue for your blessings...I am happy to take all the blessings I can get. :-*....Laura.....I will get you brochures and will e-mail you about volunteer work that you can do in Louisiana........I have always wanted to visit New Orleans......how far are you from there?  Fall and winter will be the optimal time for some fundraisers down by you.....will be in touch....Thanks much...Pat :-*

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.  [smiley=thumb.gif]

Pat, I live in Monroe, which is about 4  - 4 l/2 hours from New Orleans.  You should meet me there sometime.  If you have never been, get Diane and both of you come and we will have the time of our lives!!!  Everyone shoud visit "SIN CITY" at least one time in their life!!  But beware, there is no telling what you might see down on Bourbon Street!!!  But if you like to eat, they have some good eating!! Have you eaten Crawfish before?  You have to like spicy food for sure!!!  But the only requirement in eating crawfish in New Orleans is to "suck the heads" of the crawfish to get the good  juice out!!  Sounds gross, but it is SO GOOD!!! [smiley=headbanger.gif] ;;D

Hey Laura


we will be in Westlake

Laura--I actually love crawfish.......So, we should plan a get together there.....maybe in the Spring of next year.....good idea.....Pat

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

lake charles

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

Connie-----please read my pm about Kaiser and the help we can provide IMMEDIATELY---also, it would be ABSOLUTELY GREAT if you mentioned the start up of the Foundation in your interview....we will take all the publicity we can get.......I also keep my fingers crossed for you that at least 100 people will showon July 10th.......The first pamphlet is going to be a simple re-print of Dr. Neil Feldstein's article on the Columbia Presbyterian website...it is entitled "Puff of Smoke" and I got Dr. F's permission to re-print it on Thursday for our party in Manhattan on July 23rd.....the reason why I chose this article is that it is in "PLAIN eNGLISH" and does not include alot of technical and medical terms....it also talks about the different types of surgery......I will have the pamphlets by July 23rd......we are also working  on a logo for the Foundation......I have a graphic artist working for free on a concept involving the heart, hands and head.....we want it to be hopeful and eye-catching......the logo will not appear on the first pamphlet because it's not fully developed yet......the 2nd pamphlet should be ready by early November......I am funding the 1st pamphlet; the Foundation will be funding the 2nd and any subsequent pamphlets.....any more questions, e-mail me or post...Peace..PatM

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

Here it is.Not sure what happend to it.

Kevin

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

::)  Hi Shan!

From what Pat Told me,  Most of the larger financial contributors pulled their funding out at the last minute so the bottom just fell out of the foundation.  Oh well, That was over a year ago so the foundation idea is now in Limbo. :(
    Take care Shan,   Tom G.

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

My mom just asked me today if there was any kind of foundation for MM -please let me know how I can help. I have been saying ever since I was diagnose with mm "I feel to need to do something - anything".  So please let me what I can do.  I just emailed our states sentor(PA) asking how to lobby or something.  He diagnosed with cancer some years ago and suddenly he is interested in stem-cell research?? I just saw my dr. last friday and he said that as far as surgeries I am as fixed as I am going to get.

cheers.
Trish

Trish :DDid you know there was going to be  "OUR" second "Family Reunion" Aug. 11th, 12th and 13th in Orlando and All MMers and there Family can get FREE Disney Passes for 3 days ????? :o ::) ;;DI hope this years turnout will be Biggger than last years in Las Vegas ;) It Was ASSUME there was 16 of us w/mm and I think there will be More this year and Even More Next Year...... :o ::)

Great idea. I live in South Jersey; let me know if there is anything I can do to help.
Denise