Chase Community Giving - EDS Type IV

soxfan22 · Post by **soxfan22** » Wed Jan 20, 2010 7:33 pm

And Loria...Something that I have found interesting (and I would bet you do too) are the phenotypes associated with these different genetic disorders.

For Marfan's, it is the elongated bone structure, long thin fingers, long thin face, etc...In fact, as an example, many suppose that Abraham Lincoln suffered from Marfan's. Whether he did or he didn't, he exhibited the quintessential phenotype of a Marfan's patient.

And then with EDS...Again, a long thin face, a skinny pointed nose, very thin lips (often appearing as though the person has no upper lip)...thin translucent skin...easy bruising...This is all due to the lack of collagen production.

Everyone in my family who was diagnosed and those who passed prior to diagnosis fit these descriptions perfectly.

Hey! The GREAT news is that my Aunt Jeannie and her husband are going to St. John in April with two friends. They have never been, but having listened to us for six years, they figured they should go. I'm very excited for them, and really, she is a living miracle to me.

b-as-u-r · Post by **b-as-u-r** » Wed Jan 20, 2010 7:54 pm

I put in a vote for you. Ali!~

soxfan22 · Post by **soxfan22** » Wed Jan 20, 2010 7:56 pm

b-as-u-r wrote:I put in a vote for you. Ali!~

Thank you, Ali!!!!

LysaC · Post by **LysaC** » Thu Jan 21, 2010 1:24 pm

Done.

silverheels · Post by **silverheels** » Thu Jan 21, 2010 2:44 pm

Great idea! Became a fan not only of EDS but a couple of other charities close to my heart.

lprof · Post by **lprof** » Thu Jan 21, 2010 3:13 pm

Also a vote from me...

Am I correct that today is the last day to vote in this round??? EDS appeared to be ranked #26 this afternoon....

JT · Post by JT » Thu Jan 21, 2010 4:08 pm

Done.

soxfan22 · Post by **soxfan22** » Thu Jan 21, 2010 8:27 pm

Thank you Lisa, Iprof, Silver, and JT. Your effort is greatly appreciated!

Iprof - yes, I think today is the last day to vote. Twenty-sixth is pretty good for such an unknown condition!

Thanks for all of your help.

Russ

loria · Post by **loria** » Thu Jan 21, 2010 8:40 pm

are there other ways to raise awareness?? the so called orphan diseases are really a bugger--in terms of research funding (particularly in big pharma as you must know sox--)
anyway, i wish the best for your family and hope that iwth all the new genetics stuff that is happening that there is a serious break through soon--

and you are right--it is an interesting phenotype expression.

soxfan22 · Post by **soxfan22** » Thu Jan 21, 2010 9:22 pm

loria wrote:are there other ways to raise awareness?? the so called orphan diseases are really a bugger--in terms of research funding (particularly in big pharma as you must know sox--)
anyway, i wish the best for your family and hope that iwth all the new genetics stuff that is happening that there is a serious break through soon--

and you are right--it is an interesting phenotype expression.

I hear you about the "orphan disease status", and I agree...There just simply isn't enough money in the disease for pharma to become involved. It is one of the parts of my industry that bothers me. It's great that the FDA will "fast track" it, BUT, you have to have a new treatment to fast track!

As for ways to raise awareness - thanks for asking! Here are a couple of links, and I know my cousin is thinking about a few things as well, maybe to start in the springtime (fund raiser type events).

Here is their site on Facebook (Live Gently): http://www.facebook.com/search/?q=live+ ... 0516000988(please feel free to join if you'd like...like I said, my cousins Mike and Zack started the page, and are in the process I believe of trying to trademark "Live Gently".

Here's a story of a man with the condition doing some fundraising of his own...http://www.kmph.com/Global/story.asp?S=10553396

It also important to note that there are many different type of EDS. My family has Type IV, which is the vascular type (and the most serious). I'm sure you've seen the people who have the hypermobility type (just to draw to mind...think of contortionists in the circus)...That is a completely different type of EDS, and is not generally a fatal condition.

Thanks for the question, Loria, and I will bounce it off my cousin. I do know that he went down to Florida last fall to participate in a "poker run" (bike run) for EDS IV.

waterguy · Post by **waterguy** » Thu Jan 21, 2010 10:25 pm

lprof · Post by **lprof** » Fri Jan 22, 2010 9:28 am

I just noticed that today - Friday the 22nd - is, in fact, the last day to vote... so if reading this ahd you have not used your five votes, this is where to look

http://apps.facebook.com/chasecommunity ... ies/235097

EDS is now #24

soxfan22 · Post by **soxfan22** » Sat Jan 23, 2010 9:42 am

lprof wrote:I just noticed that today - Friday the 22nd - is, in fact, the last day to vote... so if reading this ahd you have not used your five votes, this is where to look

http://apps.facebook.com/chasecommunity ... ies/235097

EDS is now #24

Iprof...Thanks for the reminder yesterday! I meant to send this last night, but got caught up with work stuff.

And to everyone else who voted for EDS - Thank You!!

soxfan22 · Post by **soxfan22** » Sat Jan 23, 2010 11:37 am

A note of thanks on Facebook from my aunt, with updated (and final) standings. Thanks again!

http://www.facebook.com/notes/janet-bel ... 7005545998

usvi-on-line

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Chase Community Giving - EDS Type IV