YoungStroke Storms Washington

On Monday, April 8th, Amy Edmunds addressed the Rally for Medical Research in Washington, D.C. while representing the American Stroke Association. This event united approximately three thousand health-advocates, representing over 200 patient groups and research institutions, to send a strong message to Congress that funding for the National Institutes of Health must be a national priority as federal funding for medical research continues to decline.

The rally emcee was Cokie Roberts of National Public Radio, shown center here, with Amy and heart survivor/advocate Juddson Rupp of Charlotte, North Carolina. Other speakers included NIH Director Dr. Francis Collins and Congressional members.

The Rally for Medical Research is one of several activities Edmunds experienced as a participant in the 2013 You're the Cure on the Hill Lobby Day in Washington. Nearly 300 advocates were a part of this year's event, representing 43 states and inclusive of 80 heart disease and stroke survivors, 35 caregivers, 127 with a family history of heart disease and / or researchers, 60 medical professionals and 17 youth advocates.

Shown here with Nancy Brown, CEO of the American Heart Association, Amy also part in informative advocate training sessions, networked with fellow advocates, and met with legislative representatives. Her presence on Capitol Hill helped increased awareness about heart disease and stroke, as well as urged members of Congress to support priority issues including protecting funding for National Institutes of Health (NIH) heart and stroke research and garnering support for the Million Hearts initiative.

The full page advertisement featuring Amy as Founder of YoungStroke, Inc., shown above, was featured in Capitol Hill publications Rollcall and Politico on April 9 to further punctuate the theme of these events.

Learn more about the importance of biomedical research at the Rally for Medical Research Website: www.rallyformedicalresearch.org and click on the banner image above to view YouTube video of the event.

Creative Rehab Experience

Imagine jewelry made by young stroke survivors as a part of their rehabilitation therapy! Learn more here.

It happens routinely at the West End Co-Op, a one-of-a-kind community-based rehab employment program in Greenville, South Carolina. The co-op is affiliated with Roger C. Peace Rehabilitation Hospital, winner of the 2011 YoungStroke Champion Award.

The West End Co-Op provides a supportive, yet creative environment in which individuals with brain injuries can participate in "work worth doing" in a real community setting. The Co-op is an emerging small business integrative therapy model that can be used to integrate persons with brain injuries back into the workforce.

At the West End Co-op, participants perform real-life tasks to help them gain new skills, confidence, and a sense of connectedness. Participants may work as an employee, volunteer, or participate as an extension of their individual therapy. They offer custom screen printing and embroidery, hundreds of promotional items, handcrafted jewelry, and same day delivery of our signature Otis Spunkmeyer cookies.

Additionally, the co-op offers special services such as holiday plant sales, painting, spot cleaning, and janitorial services. To date, we serve over 4,000 local businesses and are always pursuing new business avenues.

The Co-op is a not for profit organization. All proceeds generated are reinvested into innovative and practical ways to help individuals with brain injury apply and evaluate their rehab skills. We've even been able to secure a storefront shop in the historic West End District, a newly revitalized area in the heart of downtown Greenville. So, stop by and see how you can give back to the community.

When you do business with West End Co-op, you'll get excellent products at a reasonable price, and you'll give people recovering from brain injury the opportunity to regain work skills and their dignity. Proceeds from product sales are re-invested in the West End Co-op.

For more information, visit: westendcoop.com

Turning Misdiagnosis Into A Mission
Neurology is complicated, sharing with others isn't!

Having a stroke is a pretty dark hour and many of the changes that occur afterward, depending on your support system, can be dark. But it's up to each of us to reach for our inner light. On Saturday, I raced to the emergency room after what I now know was a stroke. After my weekly dance class, I suddenly had an extreme headache, felt really dizzy, weak, nauseous, and couldn't see. I tried to sit, but couldn't see a chair I knew was there. I thought if I could just relax long enough, I would arise and drive home to walk my dog.

A few dancers noticed me from behind, gave me air and water and asked if they should call 911. My strong mind replied, "No, I'll be fine". After who knows how long, I managed to get up to exit the building and walk toward my car. Someone yelled from behind, "you will be like a drunk driver driving home". I remember chuckling to myself, but advanced toward the car. As soon as I unlocked the door, 3 women from the class reached for my keys, directed me to the passenger seat and said they would drive me home. Then they said they were driving me to the ER and called my closest friend to meet us there. I curled on the passenger floor with my eyes shut, feeling weak and nauseous. Story continued here.

My Story... by Cindy Geiger

Cindy is shown here as the keynote speaker at the 2012 Caregiver Appreciation Luncheon in Myrtle Beach with Amy Edmunds.

My name is Cindy Geiger. I am a true testament that strokes can happen to anyone at any time. In the fall of 2010, I had five strokes with a variety of deficits including, but not limited to, the loss of use of my entire right side. I had no risk factors - no high blood pressure or high cholesterol. I was only 41 years old, was in good physical condition, didn't smoke and was not overweight. I had no reason to have strokes, but I did, and they literally came out of nowhere. There was inflammation in the blood vessels in my brain, but why? We still do not have those answers, and I live with a lot of fear because of it. Story continued here.

Write About Your Past to View Your Future

Carole Keegan, a recent retiree and 40-year stroke survivor, is already midway through her first post-retirement project. She is developing a long awaited writing workshop for stroke survivors who are willing to share their thoughts and reflections on changes stroke has brought to their lives.

Carol holds a Ph.D. in communication and a certified facilitator of both ethic wills and guided autobiography writing workshops. Under the sponsorship of her local stroke association in Maryland's Montgomery County, Carol recently launched a new writing workshop called "Life after Stroke." '

Based on guided autobiography techniques created by the renowned gerontologist Dr. James Birren, "Life after Stroke" workshop sessions guide stroke survivors through the process of organizing, sharing and recording their thoughts about the many ways in which stroke has changed their lives. She provides a set of questions which serve as a great basis for recollections.

For the next phase of the program, Carol wants to reach stroke survivors from a broader geographic area by training more facilitators in the "Life after stroke" method and by conducting online workshops.

Participant requirements:

• At least two years post-stroke
• Internet access and a capable computer (you will be able to test that your computer is capable prior to the workshop)
• Writing time: 1-2 hours a week, producing 2-3 pages
• No fee

Read Carol's story in the Spring 2013 issue of Stroke Connection : here.

YoungStroke
P.O. Box 692, Conway, SC 29528-0692
Email: info.youngstroke@gmail.com      Phone: 843.655.2835