Amyloidosis Support Groups - Highlighted

Today I am highlighting the most active organization for Amyloidosis patients and the caregivers that I have found. Amyloidosis Support Groups (ASG) is a non-profit, 501 (c)3 corporation dedicated to "the Support of Amyloidosis patients and care givers and former care givers." Their goals are (from their site):

• to form Amyloidosis Support Groups where needed


• to have all Amyloidosis Support Groups be self sustaining through donations (general, memorial, note cards, and others)


• to fund and maintain libraries of educational materials for all support groups


• to fund group projects that will help in spreading awareness and fundraising for research


• purchase awareness items such as pins, wristbands and other similar items for meetings, memorials, and fundraisers


• to help finance the annual educational retreat for training new and current group leaders and facilitators


• maintain 24/7 Toll Free Hot-Line

They maintain the most active email list for amyloidosis patients and their caregivers. It is a yahoo list that provides so much support and information. The president of ASG, Muriel Finkel, contributes actively and shares her expertise and support with the group on a daily basis. Thank you Muriel!

The Survivor Stories section of the site, offered me the first hope for remission. I didn't even know it was possible until reading the survivor stories. The Story of Kay Rowley seemed so similar to my own, and yet she was in complete remission. I gained so much hope from that story, and emailed the link to my family. The In Memoriam portion is also very moving.

The Patient & Care Giver Resources are exhaustive. There are patient assistance programs, advocacy organizations, and links to reliable disease sources. Also included are links to other organizations that may provide additional support, depending upon your specific situation. There are even links to managing stress, and your medical records. This is a wonderful resource.

Also included is a page with links to medical information and current clinical trails.

However, the resources for the support groups themselves are in some ways the most impressive. There are groups in every major region in the United States, and from the posts to the email lists they sound like people travel from surrounding towns and states to attend. Muriel Finkel and her board and support group leaders do an amazing job at having expert speakers and organizing special events. I look forward to attending my first meeting sometime soon.

ASG is also a member of NORD, the National Organization for Rare Disorders. This site also has useful information and includes an area for ASG blogging and sharing discussion.

They also support fundraising events by posting them and supporting the organizers with their expertise and other assistance. See also www.popsrun.org and www.bobkingmemorial.com

Thanks to ASG, Muriel Finkel, the board, volunteers, and all who make these services available to patients, family and friends effected by amyloidosis!!!


AMYLOIDOSIS SUPPORT GROUPS
ASG www.amyloidosissupport.com
Toll Free 866-404-7539
National Organization Member of NORD