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Stroke Smart Magazine


Summer 2010
THE WEB

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One-Stop Sites for Support
Friends, Family Want to Help; Sites Let Them Know How

By Catherine Gray Beuten, Managing Editor

Alex Ward was a little behind in his progress as an infant, but the Ward family knew that was common and was not overly concerned. His family became alarmed, however, when Alex started having infantile spasms at 7 months old. “We went to a pediatric neurologist very fast,” explains mom, Jennifer Ward. The MRI showed Alex had had a stroke on his left side in utero.

As with each family who has experienced childhood stroke — the stroke rate in newborns is about one stroke per 4,000 births — the Wards were gripped by fear and uncertainty. But they already knew where to turn. Within two days, they had built a site for Alex on CaringBridge to communicate with family and friends.

Sites that enable caregivers and family members to post updates allow anxious loved ones and friends to help to not only keep up to date on progress, but also act on the family’s needs such as helping with shopping, meals, breaks, driving to an appointment, etc.

“We knew about CaringBridge before Alex was even born,” Ward explains. “We were familiar with it because we had a friend at church who had a daughter with medical needs and we had read her story.”

CaringBridge, which can be viewed at www.caringbridge.com, is one of a number of sites that offer Web pages that walk families through the process of page creation and enable them to communicate, interact and organize with friends and family on a broad scale when loved ones are faced with health challenges. CaringBridge notes its mission is to bring together a global community of care, powered by the love of family and friends, in an easy, accessible and private way. Another such site,lotsahelpinghands.com, also helps loved ones create a free, private, Web-based community to organize family, friends, neighbors and colleagues during times of need.

These Internet sites enable families and friends to coordinate activities and manage volunteers, communicate and share information using announcements, messages boards and photos. “I can’t talk enough about how it has been a huge support for us: the guest book entries, the prayers, the assistance, the overall support,” Ward stresses.

The connections and the chance to coordinate activities can reach far beyond the immediate needs of the family. The connections are helping to engage families across the globe to gather and promote stroke awareness. At age 3, Alex has made great progress and his family has made great friends in many states. Through the Internet, the Wards met the family of Brendan Spears, featured in StrokeSmart in 2008, whose family continues to build support and awareness www.atbrendonssmile.org. “We live in Texas and they live in Missouri, but we got together on an awareness walk.”

And that’s only one example of many. “As important as it was to have friends and family, there’s something about communicating with people who go through this on a daily basis. We’ve been able to meet so many helpful, supportive people,” Ward says.


 

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National Stroke Association’s mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all impacted by stroke.

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