Anyone have expereince with FALS?

FALS has once again struck in our family. I am having difficulty locating any thing other than sparse statistics on FALS. Does anyone know of a resource for families affected by this? Thank you.

[Celeste77]

I'm so sorry to hear about your loved one.

Here are a few places to start.
I hope you find the support and information you are looking for. I know the places listed are more then willing to help with or help direct you to whatever your needs may be.


The ALS Association website is a good place to start. It offers state to state ALS centers, programs etc. facts, latest news, and various support referrals.
http://www.alsa.org/faq/community.cfm?CFID=3375601&CFTOKEN=13355385
You can contact them directly:
The ALS Association, National Office
Phone: @[phone]
Fax:     @[phone]

Family Caregiver Alliance
A valuable resource for family members of ALS patients, the Family Caregiver Alliance specializes in nervous system disorders, including ALS. In addition to maintaining a network of resource centers, this organization sponsors education and training workshops, respite programs, support groups, and conferences. It also conducts consultations on the telephone and offers information and referrals.
(FCA)
http://www.caregiver.org


Caregiver/Family
The National Caregivers Association offers support and education for the 20 to 30 million people throughout the United States who provide care for a loved one. The association does not specialize in nervous system disorders, but provides caregiver support for a variety of conditions, including ALS. It recently conducted a member survey to determine the top concerns of caregivers, distributing information to members in the form of reports and through its newsletter. In addition, a peer-to-peer networking program helps families dealing with the same disease or with similar circumstances, establish contact with each other. In this way, families can share experiences and exchange valuable information.

National Family Caregivers Association (NFCA)
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone: @[phone] or @301-942-6430
Fax: @301-942-2302
http://www.nfcacares.org/


The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.
http://www.caregiving.org/