I am copying this letter from Mimi (onekidneygal) as most of us know her:)
Please read her message. It is really empowering
knowing that we can all make a difference with this
disease, but we need everyone’s help. Most of you have
wrote your story on this site or yahoo at
sometime, simply cut and paste it and get it to Mimi.
If you need help let me know. We have to do more than
write it here, it dosent benefit us much if we are the
only eyes that see it. WE all know this disease, it’s
time for others to know what it is about and just how
many of us there are. Below her post I have copied my letter if you need ideas.
Thanks, Kari
Here is Mimi’s post:
Hi friends, I know that many of us have written Oprah,Montel, The
View, etc. etc. Bringing about awareness is key to treatment,
future answers for our families etc. But it is tough spreading
the
word. So I am going to put some letters together to make a bigger
statement. Who knows we may get some attention. What I need to
make this work though is your participation. I am asking that all
411 of you who are on this site and either post, or are readers,
send me an e-mail with the following:
- Address it to …“To whom it may concern” or what you deem
appropriate- A brief statement why you want them (media…I will start
with
shows, news stations) to run a segment on FMD. Please make sure
that what you send me will fit on one page as I will be printing
directly from my e-mail.It would be nice if you could please
submit
your age,and where you live. Names are up to you.- If you don’t want your e-mail to appear on the page let me
know
so that I can remove it.I am really hoping everyone will participate. If I can get all
these by the end of December I will be able to send out some
packets. May is stroke awareness month, and as we have been
recently recognized by the American Stroke Assoc and others as a
cause of stroke…maybe they will consider us! We do need to get
this out early though as most media outlets plan their segments
months in advance.Please send your e-mail letter to:
Mimi, (OneKidneyGal)
My letter:
To whom it may concern: 

I am writing to you, because I want to bring awareness to a disease called Fibromuscular dysplaia. Fibromuscular Dysplasia or commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development resulting in narrowing of the artery wall. The narrowing can cause a decrease in blood flow and result in damage to the organ that is supplied by that artery. The American Stroke Association now recognizes Fibromuscular Dysplasia as a cause of stroke.
Let me introduce myself, my name is Kari Ulrich. I am 39-year-old retired RN/ Emergency Room Nurse. I was recently diagnosed with Fibromuscular dysplasia, and I am very fortunate to have found out early. In July 2006 I started running, my long runs were 10-13 miles. I was training for a half marathon. In the spring of 2007 I felt short of breath going up stairs, and could not run the distances I use to. I went from running 10-13 miles to being able to run only a mile. I developed palpitations, and felt very dizzy just sitting at my computer. I also had a very loud swooshing in my ears. I saw a cardiologist for my frequent PVC’s and he heard bruits in my carotid, epigastric, renal and femoral arteries. Further work up lead to diagnosis of Bilateral Carotid Artery FMD (Fibromuscular Dysplasia), Brain Aneurysms and Femoral Artery FMD. I feel very fortunate that I was diagnosed before anything serious happened. The wonderful doctors at Mayo Clinic Rochester are now monitoring me.
Not everyone is as fortunate as I; many young women have strokes, arterial dissections and sometimes death before being diagnosed. Patients are being sent home from emergency rooms because physicians are not familiar with this disease. This disease can strike young women, men and children and when left undiagnosed or mistreated it can be critical. Unfortunately many physicians misunderstand this disease. Fibromuscular dysplasia has recently been gaining attention in the medical community but still has a long way to go.
Please consider doing a story about FMD. With your help we can 
spread the word and possibly save lives. It is important to be 
diagnosed with FMD prior to any events (stroke, kidney damage, etc), 
as interventional procedures can benefit patients.I appreciate your time and consideration.
Sincerely,
Kari Ulrich RN
FMD Patient

If you would like more information about FMD, please visit the FMDSA.ORG