On-line Donation Calendar Offers 365 Days of Hope to ALS Patient in Personal Fundrais
 

On-line Donation Calendar Offers 365 Days of Hope to ALS Patient in Personal Fundraising Effort

Sudbury, MA December 3 2008

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Calendar For A Cause

Loopholes in the healthcare system give cause to personal fundraising calendar. Frustrated by how insignificant one donation was to Ellen’s fight for life, Mair decided that if she could get 365 friends to sponsor one day for Ellen’s care – hopes for a cure could endure.

When Ellen O’Connell Sutherland, affectionately called Ellen Oh! by close friends, announced she had Amyotrophic Lateral Sclerosis (ALS), friends had a hard time comprehending the extent as Ellen remained upbeat and hopeful. “Never have I met a more courageous woman! “ commented Mair Hill, a friend of Ellen’s since high school. It was a visit to see Ellen that prompted Mair’s involvement to get others to pitch-in for Ellen’s care – 365 people to be exact, one person for each day of the year.

Currently Ellen is paralyzed and confined to a wheelchair. She is completely dependant on others for her care 24 hours a day. It’s a struggle that she fights to stay alive to see her children grow up, living in hopes for a cure. Ellen was diagnosed with ALS, often referred to as "Lou Gehrig's Disease, in February 2005. ALS is a rapidly progressive neurodegenerative disease that affects the ability of the brain to initiate and control muscle movement including swallowing, speaking and breathing. A loss of mobility and muscle control typically progresses to paralysis and is usually fatal although feeding tubes and breathing devices can significantly prolong survival.

“During my visit, I wasn't really expecting a pity-party from Ellen. It's not her style. Although given the circumstances, it would have been understandable. Instead, the same Ellen is in there - in this shell - too painful to even let me hold her hand. She's funny, witty, intelligent and driven - just like she has always been. It just takes her a little longer. We laughed, a lot. With the aid of a speech generating computer, she explained the insanity of the medical world and clinical trials and how fortunate she is to be in one.”

As a stay-at-home mom, Ellen was denied social security benefits because she did not have five years of Social Security earnings during the 10 years preceding her disability. Community efforts and personal fundraising have been critical in her day-to-day care and her fight to live for a cure. If it weren’t for donations, Ellen would not have been able to participate in a successful clinical trial for an experimental breathing device called a diaphragm pacemaker. Ellen’s care costs upwards of $182,500 per year or $500 per day.

With the announcement of Ellen’s diagnosis of ALS, the fundraising campaigns started - all part of a financial appeal to help the Sutherland family to pay for Ellen's staggering medical bills. Mair sent her requested $1,000, but it wasn't enough.

“After visiting with Ellen, I left even more determined to make a difference.” tells Mair. “From this, the idea of an on-line donation calendar was born: 365 Days of Hope. Online donations would be a convenient way to enable all those who care about Ellen, and even those who may not have been lucky enough to meet her, to truly, truly make a difference. If we could find 365 people to each sponsor one day per year, every year, we could take the financial stress out of the mix for Ellen and her family and let them concentrate more on the powers of healing and enjoying their time together.”

Maggie Strevell, President of Naper Solutions, Inc., an interactive marketing company, put the calendar concept together. “As I got to know the Sutherland’s through this process, I grew to understand just how important fundraising is to the family’s survival. They have basically been abandoned by the healthcare system, falling through loopholes.” said Maggie. John Sutherland, Ellen’s husband of 17 years, explained as they worked on the calendar that, “ALS patients are caught in the perfect storm with horrific systemic failures in our healthcare system far more shocking than what the politicians have been talking about. This is so much deeper than insurance coverage for those who don’t have it; unless you have experienced it you can’t even begin to imagine how bad it is.”

With Ellen and her family in Massachusetts and Maggie and Mair in Illinois, geography proved to be no boundary in finalizing the calendar. As Mair read the emails flying back and forth as the final pieces were put into place, “I would sometimes forget that one of the correspondents was Ellen, a woman who has to type one letter at a time from a dot mounted on her glasses to the computer screen: a woman who is no longer able to use the telephone. Never was there any indication that something was too tough for her to do. It all just got done.”

Already the donations are coming in. Every dollar that is donated is a family celebration.

Read more about Ellen’s courageous battle with ALS by visiting www.ellenshope.org.

How You Can Help
Donate on-line by sponsoring a day of Ellen’s care at www.calendarforacause.org/ellen. Checks can be mailed to The Ellen Sutherland Fund, P.O. Box 18, Sudbury, MA 01776 or to Bank of America, 22 Union Avenue, Sudbury, MA 01776.

John Sutherland is also on the board of the ALS Therapy Development Institute (ALS TDI), a nonprofit biotechnology company dedicated to accelerating treatments for patients with ALS. To donate to ALS TDI, visit www.als.net.

About Calendar For a Cause
Calendar for A Cause is an electronic calendar hosting platform. Donations made to individual calendar causes go directly to the cause. The premise of the calendar concept is that collectively, as a group, we can make a difference. 365 days make a year. Take a big problem and divide it by 365 days and you have a manageable goal. You can be part of the solution by being one of those 365: One Person. One Day. One Donation.

Visit www.calendarforacause.org for more information.

Maggie Strevell
President
Calendar For A Cause
Naperville, IL
Phone : 6305485614

Calendar For A Cause

More Information Ellen's Courageous Battle with ALS
Contact Maggie Strevell

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