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What about a Moya Moya Trail?? (Read 5979 times)
charl
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potsdam, USA, usa, 473, 66, NY, New_York
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What about a Moya Moya Trail??
Nov 2nd, 2008 at 5:24am
 
Alot of us live around the U.S. What does everyone think about possibly offering mmers on the road for surgery and tests a place to spend the night at no cost. I really live in the middle of nowhere but if someone was going to boston and needed shelter I would be willing to put them up for a night. What about California? I remember we maxed every credit card we had between our daughter and my sisters surgeries. some times the affordable places to stay are full.(20 per night)Just a thought, let me know !
Amiee
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my now almost 19 year old daughter/sister have moyamoya
 
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Michele
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Yankton, USA, SD, South_Dakota
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Re: What about a Moya Moya Trail??
Reply #1 - Nov 2nd, 2008 at 9:40pm
 
I think that's a great idea.  I would be willing to put someone up for a night and offer a free meal.  Or even help someone make hotel arrangements.  I too live in the middle of nowhere, but I know what hotels are cheap and which ones NOT to stay in!  Too bad we don't have a map on here that shows where the doctors are and where we are.  I have no idea how a person would do that, but Im sure it can be done.   Smiley
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Mar
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Re: What about a Moya Moya Trail??
Reply #2 - Nov 3rd, 2008 at 10:08pm
 
Thatís why this website and itís active members are so valuable. If a new member comes here and reaches out for help of any kind, then any member that is in position to help them can offer their assistance in whatever way they choose. So technically, it already exists in this forum. Iíve seen many members open their home, their hearts and much, much more.

DJ now has everyoneís location right under your user ID, should a new member see that location and want to get in touch with any member privately, there it is too.

Yes there are many members throughout the USA, but the truth is with many of the members, once they get the information or help they need, they move on with their lives and seldom come back to the website, so the trail is much shorter than it looks.

We had a "members map", but not all members posted their location, just like the section "Surgeons with Bypass Experience", not all members posted their surgeon with MM experience, or their location and the contact information.

So this forum does it all under those circumstances. Iíve seen it help so many and most importantly, save lives. Itís amazing!

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mlgohsman
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USA, Saginaw, Michigan
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Re: What about a Moya Moya Trail??
Reply #3 - Nov 7th, 2008 at 12:52am
 
id be willing to put someone up and a free meal too, i live about 90 min from the u of m, ( michigan) and i know its kinda far, but do whatever i could to help. If you go to the u of m, there a hotel that offers a discounted rate for people that are have appointment or for family in the hospital. its like 48 a night with tax and everything i think it turn out to be 58 but its better than 100!! right ?? lol  If anyone needs anything let me know
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Sta-Mca bypass June 27th 2008 Smiley Ruptured aneurysm, 10-04-08
repaired 10-06-08 and one aneurysm 10-11-08 clipped 10-20-08
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.Aaron.
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South Dakota
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Re: What about a Moya Moya Trail??
Reply #4 - Nov 27th, 2008 at 10:34am
 
What ever happened to the membership map?
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Monica
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Los Angeles
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Re: What about a Moya Moya Trail??
Reply #5 - Dec 4th, 2008 at 3:39pm
 
I live in Germany...so, I don't think anyone would be here for moyamoya reasons, but never the less, if anyone is traveling Europe, I'd be happy to put someone up here.  It's very rare that I ever get to meet or talk to other people with MM. 

Monica

PS - I'd offer to give them a meal but I'm a horrible cook  Smiley
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Susan H
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Susan - Mark's Mom

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Methuen, MA
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Re: What about a Moya Moya Trail??
Reply #6 - Mar 9th, 2010 at 8:41am
 
My 6 yr old son, Mark, had his MM surgery on Feb 5th and is doing fantastic!!!

I received a welcome / info packet from Childrens Hospital and in it was a brochure for what they call "Parent Sleep Suites" (located in the hospital).  It is for one of the parents to sleep in the first night when the child in on the ICU floor and the other parent stays in the room on ICU.  The brochure name is - Parent Sleep Suites, Farley 5 and Farley 6.  It is thru the Center for Families, Farley 111, phone number (617) 355-6279 - they are closed on Sundays.  They only have 26 rooms and need to reserve early.

I also picked up a brochure in the main lobby at Childrens - which is to stay with a host family (not a MM family).  This is thru - Hospitality Homes, phone (617) 482-4338 or (888) 595-4678, web address is www.hosp.org ;  I don't believe they are directly associated with Childrens - think its for hospitals in the Boston area.  It says - housing provided at no cost - but says they suggest you give host family a $25 nightly contribution.  Also says cost should not be a concern.  They provide you a place to stay and a meal - you can also do laundry at the host home. 

Thought this is good info to share with others.

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srkm5482
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Sugar Land, TX
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Re: What about a Moya Moya Trail??
Reply #7 - Sep 7th, 2010 at 9:26am
 
There's also the Ronald MacDonald Houses, etc. that can help families with this.
http://rmhc.org/what-we-do/
There are many across the nation.  We have one in the Houston Med Center.  A family we've met whose son had extremely dangerous neurosurgery after being hit by a baseball received housing from one in FL.  Last year (7 yrs after the accident) this young man raised over $1000 to donate to that RM house and built picnic tables there for his Eagle project.


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Sue (Kyle's mom)
 
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Carey
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Waterford,Ct
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Re: What about a Moya Moya Trail??
Reply #8 - Apr 21st, 2012 at 11:29am
 
I have an extra room and live in ct 2 hours from Boston. Anyone is welcome to stay with us
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