Sharing info, caregiver resources

From time to time I post resources on ASAP (American Syringomyelia Alliance Project), the message board I do admin work for. I never thought to post them here, where people may find themselves after doing various web searches. I am going to do some posts now, separated into appropriate categories.

Before I do that though, I want to share something very important to me. Many of us are not really able to financially help fund the research for a cure for Chiari and Syringomyelia. We can however still make a difference. One method that is unbelievably easy is GoodSearch. It is a search engine, just like Google and Yahoo, but it donates a penny for every search to a charity. ASAP is registered with them. While it may not seem like much, imagine if many of us were using it for our searches?

Simply select American Syringomyelia Alliance Project in the box by the yellow buttons. You can also see how much money is raised per month. If you just enter 'syringomyelia' then the foundation name will pop up.

GoodSearch also has an option to add it to your Explorer, Firefox, or Mac toolbar to be your default search engine. The instructions are on the above link. I know for me, doing this has resulted in so many more searches than before being credited to ASAP. Since it is now my toolbar's default, ALL of the searches automatically go through GoodSearch. I set it up on both our computers so my husband doesn't have to try to remember to use it--it's just there!

You can make a difference! Consider adding GoodSearch to your favorites, making it your homepage, or having it on your toolbar. Let your family and friends know!

Action magazine (United Spinal Association's monthly publication) this month is dedicated to caregiving issues. Here are some sites I read about in one of the articles and checked out.


National Family Caregivers Association

Share the Care

Lotsa Helping Hands

CarePages


BTW United Spinal Association is great; joining and receiving the magazine are free. They have been around for 60+ years and their magazine is also offered online.

Loss of a great man

This is near and dear to my heart, doing committee work at ASAP. They are a tremendous group, providing major funding and grants to Chiari and Syringomyelia research:

Don White, Co-Founder & Chair Emeritus Passes Away

It is with great sadness that we inform you that Don White, Co-founder and Chair Emeritus of ASAP, passed away on January 02, 2008.

Together with his wife, Barbara, Don founded ASAP in 1988. Frustrated by a lack of information and confusion after Barbara's diagnosis, they vowed to bring awareness to these little known disorders. It was their dream that no person would face a diagnosis of SM or CM alone.

Although Barbara became quadriplegic and succumbed to complications that led to her death in 1991, Don remained committed to their mission. Even while battling cancer, Don's devotion to ASAP was so strong that he continued to regularly attend board meetings.

He once said, "There was no ASAP for Barbara and me, and we were determined to do something about it. We believed then and I still believe now, that ASAP can and does make a difference in the lives of those affected by Chiari and syringomyelia."

ASAP extends our sincere sympathy to the family and friends of Don White. It has been an honor to share in the life and mission of this remarkable man. Because of his efforts, SM and CM are becoming better recognized, and our awareness and understanding of the disorders continues to increase. He has made a profound impact on the lives of many.

As we embark on our 20th year anniversary, the ASAP family is more committed than ever to seeing the organization carry on until the mission is fulfilled and a cure is found.

A memorial fund in Don's name has been established. Donations to this fund may be made to ASAP on-line or by mail:

Don White Memorial Fund