Total Pageviews

Saturday, January 29, 2011

Fibromuscular Dysplasia 72 hour Marathon

72 Hour Voting Marathon!

There is 3 days left to vote: Our current Rank is 22, we are so close! We need to be in the top 10 to get this grant!


Ways to vote:

Log into Pepsi Refresh and Vote Daily Here: http://www.refresheverything.com/mwva
Vote from your mobile phone: Text 103887 to Pepsi (73774)

How will the grant be used?

$15,000 for Mayo Clinic with collaboration of Cleveland Clinic Biorepository
$15,000 for University of Michigan FMD registry headed by Dr. Jeffery Olin

That is $30, 000 that will go directly to needed RESEARCH!

$20,000 to continue MWVA mission so that we can continue to do our advocating on behalf of women and their families!


I also want to share with you something amazing that has happened thanks to Pepsi Refresh!
In 2007 Kari was diagnosed with brain aneurysms along with FMD. She has been in contact with Natalie Niekro, she is the beautiful daughter of Joe Niekro (Major League Baseball Player- played for the Twins) Joe Niekro passed away from cerebral aneurysm. Natalie started a foundation, the Joe Niekro Foundation to raise awareness and research money for aneurysms. She did a fundraiser in 2010 with the Minnesota Twins, and Dr. Robert Brown, Director of Neurology - Mayo Rochester. The Joe Nieko Foundation and MWVA are teaming up to fight brain aneurysms!

To find out more visit: www.mwva.org



Let's make this next 72 hours count! Please VOTE!

Thursday, January 27, 2011

Brain Aneurysm

I just had the wonderful opportunity to speak with Natalie Niekro, the beautiful daughter of Major League Baseball player Joe Niekro. What an inspiration Natalie is, she has put countless hours into raising awareness of aneurysm causes, treatments and research. As a patient with Fibromuscular Dysplasia (FMD) of the carotid arteries I also have brain aneurysms. I am grateful for the work the Joe Neikro Foundation is doing, it will make a difference in lives of those affected by FMD. Please take a moment to learn more about the Joe Niekro Foundation.

"There is an increased prevalence of intracranial aneurysms in patients with extracranial cerebrovascular FMD compared with the general population. In a meta-analysis of 18 studies involving 615 patients with carotid or vertebral artery FMD, the overall prevalence of intracranial aneurysms was 22%. However, when patients presenting with subarachnoid hemorrhage were excluded, the prevalence of intracranial aneurysms was only 7.3%  2.0%. Other investigators have reported a prevalence of 22% to 51%. ( Olin and Sealove, Journal of Vascular Surgery, 2011)




All too often, life throws us a pitch we aren’t prepared to catch.  For Natalie Niekro, that curve ball came October 26, 2006, just four weeks before the fairytale wedding she’d been dreaming of all her life. On that day, Natalie’s father, a former major league knuckleball pitcher, Joe Niekro, suffered an unexpected and what would turn out to be a life devastating brain aneurysm. With her world turned upside-down, Natalie channeled her sadness, anger and frustration into her new life’s mission: Combating the enemy that prematurely took father. Leaving a successful career in the corporate world behind, Natalie started The Joe Niekro Foundation…Knuckling Up for Aneurysm Research, a 501 c-3 organization committed to awareness, research, treatment and education of brain aneurysms - the silent killer that affects 1 in 15 Americans. 

With over $2 million raised to date, The Joe Niekro Foundation has created strong partnerships with Major League Baseball, multi-million dollar corporations and hospitals across the country. The Joe Niekro Foundation PSA’s have received nationwide coverage as television stations across the continent are “Knuckling Up” and joining in the fight against aneurysms.  In honor of Joe Niekro, several of the Major League Baseball teams will feature Brain Aneurysm Awareness Day this upcoming season and The Joe Niekro Lectureship and Symposium on Early Detection and Treatment of Cerebral Aneurysms will take place this winter, along with the foundation’s largest event of the year, The Knuckle Ball which will take place this November at Minute Maid Park in Houston. 

The foundation also serves as a support group, connecting individuals who’s lives have been impacted by brain aneurysms. In just 2+ years, Natalie has forged bonds with countless victims and their families across the country; some stories have happy endings, others similar to her own. By offering everything from words of wisdom to a shoulder to cry on, Natalie has thrown back the curve ball and committed to changing the course of this disease. These events, in addition to several others, are what Natalie spends her days and nights working on, but this is only the beginning. Thanks to Natalie’s tenacity, passion and determination, lives will be saved, fate will be altered, lives will be changed and the legacy of Joe Niekro will forever live on.

Wednesday, January 19, 2011

Advocacy, Education & Empowerment | Genetic Alliance

Advocacy, Education & Empowerment | Genetic Alliance

Midwest Women's Vascular Advocates featured in Genetic Alliance: Meet your Neighbors!

Tuesday, January 18, 2011

Fighting Fibromuscular Dysplasia




FMD is a debilitating vascular disease that affects young woman, children and to a lesser degree men. Research dollars are hard to come by. Lets fund this disease and help the millions it affects!

Text 103887 to Pepsi (73774) or log on  http://www.refresheverything.com/mwva

Diagnosis, management, and future developments of fibromuscular dysplasia.

Diagnosis, management, and future developments of fibromuscular dysplasia.

Please help us fund the patient registry just by voting:
Text 103887 to Pepsi (73774) or log on http://www.refresheverything.com/mwva
We are a support group based out of Minnesota trying to raise funding for research, education and support.

Thank you, Kari Ulrich FMD patient

Sunday, January 16, 2011

Fighting Fibromuscular Dysplasia

Please Vote to fight Fibromuscular Dysplasia! Time is running out- help us save a life.

Text 103887 to Pepsi (73774) or log on  http://www.refresheverything.com/mwva 





FMD is a debilitating vascular disease that affects young woman, children and to a lesser degree men. Research dollars are hard to come by. Lets fund this disease and help the millions it affects!

Wednesday, January 12, 2011

Hospital Social Media and Lack of Social Media Policy

Make a difference in Rare Diseases! Support Research for Fibromuscular Dysplasia

Alone we are rare. Together we are strong - NORD

NORD strongly believes that it is important to support all of the rare disease related ideas in this month's Pepsi Refresh project, to stay consistent with our mission to support and help all individuals affected by rare diseases: 



Rare Disease Day February 28, 2011


Sunday, January 9, 2011

Save a Life VOTE: Fibromuscular Dysplasia

Fibromuscular Dysplasia is a devastating vascular disease and you can make a difference simply by voting!


Vote from your mobile phone: Text the number 103887 to Pepsi (73774)
*Standard text messaging rates apply.
 






Tuesday, January 4, 2011

Power Women Magazine Internet Radio: Fibromuscular Dysplasia

Deb Bailey's Power Women Magazine Interview with Kari Ulrich Co-Founder of MWVA on Fibromuscular Dysplasia


Listen to internet radio with Power Women Magazine on Blog Talk Radio

Monday, January 3, 2011

Fighting Fibromuscular Dysplasia

Exciting news for those of fighting to fund research, education and support for FMD! Our Pepsi Refresh Idea at
1/3/2011 9:08 PM MWVA Rank 8! We need to stay in the Top 10 To be funded.

I would like to share with you an email received today from Dr. Olin:

This is a very important initiative that Kari Ulrich and Jennifer Moreen (from the great state of Minnesota) have undertaken to help us increase funding for research in fibromuscular dysplasia (FMD).   If each one of you follow the instructions below and VOTE EVERY DAY FOR THE MONTH OF JANUARY , we have a very good chance of being awarded a $50,000 grant which will be used to support research in FMD.  It only takes a couple of minutes a day.  As many of you may know, I have focused my research on this potentially very debilitating vascular disease that affects young woman and to a lesser degree men.  Research dollars are hard to come by.  Kari and Jennifer (among several million other FMD patients), the board from FMDSA and I will be very grateful for your voting support.  To learn more about FMD go to www.fmdsa.org
 
 
You can vote by following the following instructions:
 
Text 103887 to Pepsi (73774) or log on  http://www.refresheverything.com/mwva

 
We are currently in 8th place.  Lets try to be first.  Remember, we need to vote every single day in January to have a chance for 50K.  And don't forget to tell all your friends and colleagues. 

I could not have said it better myself!

Sunday, January 2, 2011

Midwest Women’s Vascular Advocates wishes you a Happy, Healthy 2011!

We have appreciated all of your support and votes these past few months. Jennifer and I have decided to continue pursuing the Pepsi Refresh Grant in January. We have made some wonderful friends and have found this is an incredible opportunity to spread awareness of FMD!


VOTING BEGINS TOMORROW- JANUARY 3 - 31,  2011

Text 103887 to Pepsi (73774) or click on link below: http://www.refresheverything.com/mwva 


We need your daily votes to make this happen! We understand the commitment it takes, but believe that the funding and awareness is worth the effort. We look forward to see you all voting and commenting starting January 3 through January 31st.


Lets make 2011 the year that FMD is funded! MWVA has teamed up with some other wonderful causes that are helping us fight for our cause. Please continue to vote for our team and leave comments when you have a moment.

NEED MORE INFORMATION? Visit www.mwva.org


$15,000 Mayo Clinic with collaboration of Cleveland ClinicBiorepository 

That is $30, 000 that will go directly to needed RESEARCH!

 $20,000 to continue MWVA mission so that we can continue to do our advocating on behalf of women and their families!