Hi MM Family.

This my first try of posting links that help people who need health care assistance.Hope It helps!
Not that many out there.but look at your state and county web sites.                                                                              All of these have eligibility guidelines posted on each site.
               
                Hill-Burton Program


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


              Department of Veterans Affairs
when you get this link, click on health.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
You have to be a Veteran or spouse and dependants of a Veteran.

         State Children's Health Insurance Program
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I will keep looking!Please add to this.
Kevin

Hi Kevin (Cubbie) and Dewski,

I found the following link to Financial Resources through the Office of Rare Diseases to include financial aid for medical care and procedures, medical treatments, assistance with paying for medications, assistance with insurance issues and participation in clinical trials. This is located on the Rare Disease Information Center page. It also has a link for families with children with special health care needs.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

                                                                       

OK for anyone living in Michigan

There is hope................
Contact Childrens Special health Care Services
at 1-800-359-3722 here is what they told me they need a letter of dx from Dr. and will make determination on wether treatment will be covered on a case to case basis.....Have your Case worker expedite to director for a 2 day response, Also if you feel there is not enough expertise with in the state they may fund for out of state treatment and evaluation etc. they will cover mileage and meals as well as treatment costs.

Also if your child has special needs, I.E. wheel chair van lifts, ramps, electrical upgrades for home moitioring contact Children with special needs fund at (517)241-7420

I hope it turns out to be as easy as I was told to get approval.........check back under this catergory as I will keep every one poted as to the financial assitance I receive and the hoops I had to jump through to get it


special thanks to Elaine and Kristen  who helped me with wear to go to find what I needed in Michigan

Mike

Robert is approved for out of state treatment at Stanford. It took about 2 weeks of jumping through hoops, and rattling cages but he is approved, Now Stanford files paperwork to become a Michigan Medicad providor and accepts Michigans scale of Pay and we are set...............Please anyone in michigan that needs help feel free to cantact me................I know what i did to get the approval.

Mike

I am new to this.  My sister was just diagnosed with MoyaMoya a couple of weeks ago and she does not have health insurance.  She is 40, married and mother of 6 children.  The hospital is going to work with us on the bills, but the surgeon is a different story.  She does not qualify for Medicaid, his office does not take Medicaid anyway. 

Does anyone have any suggestions?  Thanks for any insight you can provide.  We live in Louisville, KY.

Michele,

I personally find your post offensive and unfair. You say you have no health insurance, yet still; one of the best MM specialists’ in the country takes his invaluable time to review your films at no cost, and give you his expert opinion. Then on top of that, Stanford even asks if there’s anything else they can help you with to let them know, and yet you have the audacity to come onto a support board and talk it down and show absolutely no appreciation for that life saving gesture, that very few other doctors or hospitals do, and act like it’s their fault you have no insurance, when nearly 47 million Americans are in the same boat as you. Then to say it took a whole three weeks to get his opinion… c’mon, get real!  It takes longer than three weeks to even get an appointment with ANY specialist, let alone get their opinion for free in that amount of time. In all fairness, how on God’s green earth could that not have been a positive experience?

Our heart aches for the many patients we see that can’t get the help they deserve, but we all try to work together here and support one another and fight to get some kind of answers, some how some way, but we don’t slam the good people like Stanford who are only trying to help. What more do you want from them?! C'mon, be fair!

I hope and pray you get the help you deserve.

Michele,

I had very similar circumstances when I was diagnosed.  Perhaps this site might help.  I didn't use it as it didn't exist when I was going through all this.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Best of luck to you.

Mar, You are correct that like 47 million other Americans, I do not have health insurance.  If 1 in 2 million people (or more!)  have moyamoya, how many of them are in the very same situation I am.  Like many of you, I was diagnosed and was looking for answers.  I came across this site and was relieved to see that many others had the same diagnois and have been successfully treated.

       "I wasn't pleased to see that there were   others like me, but I felt comforted to know that there are others that have and were experiencing what I was." message board moyamoya.com

I also discovered the Stanford website and became aware of the genetic research they were conducting.  It was my understanding that a person could submit a genetic sample and they would test it to see if your moyamoya is genetic.  I was especially concerned because I have a 1st cousin who most probably also has moyamoya.  I thought for the sake of my family, I should find out if I have a genetic mutation that has caused this.  According to my current Dr. I have moymoya because I smoked for 20 years.  I have not been able to find anything that indicates moyamoya is caused by smoking.  I am aware that smoking increases the risk of stroke.  I then contacted Stanford and requested to participate in the genetic testing.  The following is the email I received:

7-24-08
Dear Michele,
Your email about a recent diagnosis of moyamoya was forwarded to me. We are happy to discuss the research aspect of moyamoya with you, but are also interested in getting help for you with regard to treating your disease. If you would like Dr. Steinberg to review your case, he would be happy to do this free of charge. Have you looked into whether or not you qualify for any state Medicaid programs since you say you are uninsured?

When I got this email, I believed that they (Stanford) would somehow help me get treatment.  It took several weeks for my Dr. to get the CD to me with my MRA's and MRI's.  Once I got the CD, I sent it to Stanford.  When I didn't hear from them, I again emailed.  This was the response.

8-29-08
Hi Michele,

We received your films on CD. You are scheduled to be reviewed at our next case conference. We usually have them on Mondays, but this coming one is Labor Day, so it will be the next one. I'll be in touch as soonas you case has been reviewed.

I again emailed Stanford the Tuesday after they were scheduled to review my CD.  Again, here is the response.

tues.9-9-08
Yes, we did. I will call you today. What is the best number?

I emailed back with telephone numbers that I could be reached at throughout the day.  When they didn't call, I emailed again for the next several days  to let them know what number I could be reached at throughout each day.  I was honestly praying that my diagnosis was WRONG.  I had come across another person on the internet that had been misdiagnosed, and I was praying for the same although I knew the chance of that was slim. I also was curious about what kind of "help" they could offer.  On Friday morning of that week, I sent another email and basically begged for them to call me.  By this time, my family members were calling on a daily basis and we were all on pins and needles.  Late Friday afternoon I got the call.  The left side of my face and my left hand were numb when I got the call, but this happens several times a day, and I know that I just have to keep going until it goes away.  I tried to listen to the information I was hearing, not understanding most of the medical terminology.  But I remember hearing "surgery on one side, possibly 2", "need another test", "Let us know if there is anything more we can do."  I then asked if they could mail those results to my doctor.  I was hoping he could explain them to me.  They said "no we can't, but we can send a letter to you and you can show your Doctor." I then asked about the genetic testing and expressed my concern for my children.  I was told even if it is genetic it might not be traced to my children, but could be a cousin, etc.  I don't remember the exact explanation, as I said, I was in the middle of a TIA when they called.  I have never recieved the letter.  My Dr. has never even suggested surgery and I wasn't even aware of it until I found this site.  Without that letter to back up a suggestion for surgery, I don't know what to do.  But was still hopeful about the genetic testing.
Later that same day I recieved the following email:

9-12-08
I have to emphasize, that the study is not diagnostic and you will receive no results. We are actively researching moyamoya and hope that contributions like yours will lead to answers.

I then explained to my family that we would get no results from the testing.  The overall response from my family was this was a big waste of time and got our hopes up for nothing.  On this site, there have been so many people who were promptly treated.  Thank the good Lord for that. 

"My daughter (21) was diagnosed and had her two surgeries at age 17. After years of migraines, we learned that she had had two small strokes early on in her life. Once we finally had a diagnosis, she was in her first surgery two weeks later." message board moyamoya.com

"Because of what I have learnt here, within less than a month after diagnosis, I will be having surgery, and my life will be saved and my little girl will continue to have the mother she needs and deserves." message board moyamoya.com

BUT.. as I said, what about those of us who don't have those resources?  It isn't anyones fault, and it certainly isn't Stanfords fault that we don't have insurance, and aren't eligible for medicaid or medicare.  I never implied that it was anyone's fault I don't have insurance.  Like Mar said, 47 million Americans don't have insurance and that IS real.  From the sample posts above and many others, some people may get the impression that Stanford is  going to save us all.  If you don't have the resources, the REALITY is, they aren't gonna do much.  At least Rebecca knows her sister isn't the only one in this situation.  According to the ethics posted on this site, that is what we are here for.

2. It is the mission of Moyamoya.com to provide a place of support, aid, and assistance to sufferers, et al after they have found the site and would like to inquire more about treatments and other people’s opinions and experiences.  message board moyamoya.com

I haven't had the chance to read everything on this site, but I have spent alot of time here.  I was fully aware that someone might have a problem with another poster saying anything negative about Stanford.  Apparently I am not the only one who has been concerned about expressing unpopular opinions on this site.

"I am just concerned that if one of your members happens to have a view that differs from yours (or some of the other members), do you consider yourself doing “injustice" by allowing them to express their views/opinions?"  message board moyamoya.com

If I choose to post my personal experience in an effort to make someone else aware they are not alone, and someone else wants to get offended, so be it.  I'm not going to apologize for my experiences or feelings about those experiences.  Unlike many of you, Stanford HAS NOT saved my life, despite what some of you may think.  I have received nothing tangible from them that would even assist in my healthcare. 

To Shan, THANK YOU  THANK YOU THANK YOU!  I do not know how much of your information will help, most of your suggestions I have already looked into.  BUT, you obviously spent alot of time researching options for me
and your post literally brought me to tears.  Thank you for your genuine care and concern for other people.  With the support and encouragment from people like you, we should all continue to seek proper medical treatment whether we have insurance or not!!!  I will also continue to thank God for people like you and Lisa, etc. 
God Blesss You all.

Michele,

I did have my surgeries, the first one without knowing how the heck it was going to get paid for although it did end up ruining my credit.  In the end it did turn out okay as I did get approved for Medicaid with the help of a lawyer.  It was a nightmare and it was enough to drive me nuts.  You get diagnosed with this scary disease, feel like a ticking time bomb, yet the resources are not there to get the help that you so desperately need.

Before I hired a disability lawyer I spoke with my mayor, my congressmen,  my senators or anyone who would listen.  I spoke to newspapers, television news stations etc.   Senator Obama met with me several times, promising to help, but then dumped me to campaign for US senator.  (Don't get me started about that!)  Here is an article I had written at the time (between surgeries).  It's not exactly all correct but it will give you some idea of what went down.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I, like you, was most astounded by the fact that I would probably get help AFTER I was totally disabled from a massive stroke but no help to PREVENT getting to that state.  It still boggles my mind. 

My biggest advice to you is to let people help you with all of this.  In fact, ASK those around you to help you.  You can not allow this red-tape stuff to get you too upset.  I know that you feel like it's all "hurry up and wait" but don't let it drive you insane.  Somehow, someway, and with some help from friends and family, I have faith that this will come together for you.

Feel free to e-mail me to vent at anytime.

Lisa

At the encouragement of many on here, I sent an email to STanford asking for the letter...I got an email back that said I would get it via email that same day.  I then got another email saying it was sent o the wrong address and asking to verify my adress.  I did verify the address (the spit cup came without problems??).  To date, I have not gotten the letter.  I did get a response to my request from NORD.  It appears they only provide educational materials.  They will send the materials, haven't gotten them yet either.  The other day I got a headache that made me CRY!!  I am not a weeney, and this was, I can't even say how much worse, than the headache accompanying a stroke.  I KNOW i am getting much worse as the days go by.  I do have an wppointment with my neuro on the 14th...but he is not too helpful.  Praying I get a letter from Stanford before then!  Thanks to all the people who have sent me uplifting emails!  Its nice to know that some people DO understand and are supportive.
God Bless You ALL,
Michele