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Community Services
What is the difference between a chapter and a free standing support group?
The ALS Association's nationwide affiliate network is comprised of both chapters and free standing support groups. A chapter is a multi-faceted grass roots organization responsible for carrying out the mission of The ALS Association and its strategic goals for patient services, community services, public awareness, advocacy, support of The ALS Association's national research effort and the fundraising necessary to support all of the above. A free standing support is a support group that exists without the support of a local chapter. It is a group of people that meet regularly for the purpose of providing support and information to people with ALS, their caregivers and families.
The ALS Association chapters serve the ALS community within an assigned service area often covering an entire state or portions of several states. A chapter is governed by a local volunteer board of directors. The board and the staff (typically an executive director and patient services coordinator) work together to fulfill the obligations of the chapter. An essential component and a requirement of every chapter is a monthly support group meeting. Many ALS Association chapters have several different support groups in order to meet the needs of all of their constituents. The support group provides social and emotional support as well as information about managing the disease to patients and their families. Other patient services provided by a local chapter may include referrals to community resources and medical professionals, equipment loan programs, educational conferences, distribution of educational materials, respite care programs, augmentative communication programs, home visits and a variety of specific topic support groups. Chapters also have programs in advocacy, public education and awareness. Fundraising is conducted year-round by the chapters to support its programs and services.
Chapters require many community resources to build the infrastructure necessary to sustain the work of the chapter. If those resources are not readily available, it may be more appropriate to form a free standing support group. Free standing support groups may help in The ALS Association's advocacy efforts through letter writing campaigns to their local and state politicians. Free standing support groups do not usually participate in active fundraising, however some do grow and organize to the extent that they may ultimately seek chapter-in-organization status.
How do I start a chapter?
If you are interested in starting a chapter, you should begin by contacting the Community Services Department in The ALS Association's National Office at (818) 880-9007 or by e-mail to communityservices@alsa-national.org
The first step is determining if your geographic area is currently being served by an existing an ALS Association affiliate. If your area is not currently being served, the Community Services department will work with you to determine if there is a need and adequate support to build the infrastructure necessary to sustain the work of the chapter. In some cases it may be more appropriate to start a free standing support group.
Once the need for a chapter in your local area is determined, you will need to identify at least six other individuals who will commit their time and energy to starting a chapter. This group is then referred to as the Organizing Committee and is committed to carrying out the mission of The ALS Association locally. This group will consist of a Chairperson, Treasurer, Secretary, Patient Services Chairperson, Public Education Chairperson, Fundraising Chairperson and one other member. It is important to identify people who have the professional skills and experience that will allow them to be successful in each of these areas (i.e. a treasurer with accounting skills). Most importantly, these folks need to make a commitment of their time and energy to getting the chapter-in-organization off the ground.
The Community Services Department of The ALS Association National Office will make several on-site visits to assist the Organizing Committee with the chapter start up. A chapter-in- organization is required to meet certain criteria in order to earn their chapter charter. This process usually takes 1-2 years.
How do I start a free standing support group?
To start a free standing support group, contact the Community Services Department at (818) 880-9007 or via e-mail at communityservices@alsa-national.org.
The ALS Association prefers that support group facilitators be qualified health care or mental health professionals familiar with ALS. In the event that you are a layperson interested in starting a free standing support group, we strongly suggest that you identify and recruit a health care or mental health professional to help start and co-facilitate the group.
The next step in the process is to confirm that your geographic area is not currently being served by an existing ALS Association affiliate. If that criterion is met, the Director of Affiliate Patient Services will send out preliminary information to you on how to start a group. Then a needs assessment is conducted to see how many people are in need of and are interested in attending an ALS support group in your geographic area as defined by zip code. Once a definitive need is established, you will select an appropriate meeting location, date, and time, and communicate it to the community via flyers, letters, doctor's offices, or local media. For a group to be recognized as an ALS Association affiliate, the facilitator(s) must complete an "Authorization to Operate a Support Group" form. This form is filed at the National Office and the group is then included on any ALS Association publications that list affiliates, including the web-site. The National Office provides free standing support group facilitators with a program manual that includes policies and suggestions for program development and planning.
I want to hold an event to raise funds for The ALS Association. How can you help me?
Any individual or group can hold a fundraiser with proceeds to benefit The ALS Association.
If there is an ALS Association chapter in your area, we would be happy to connect you with your chapter to discuss ways for you to help with local fundraising efforts. If you do not live near a chapter and would like to do a fundraiser for The ALS Association, we can give you ideas on how to make your event successful. We can also supply ALS Association literature for you to distribute during your event to increase awareness and help educate people about ALS. Please contact the Community Services Department at (818) 880-9007 or by email at communityservices@alsa-national.org to discuss the details of your fundraiser.
Does The ALS Association participate in workplace giving campaigns, such as the United Way?
The ALS Association National Office is a member of the Community Health Charities, a federation of the country's largest health charities. The federation raises money through workplace giving campaigns in the public and private sectors. Upon meeting the eligibility requirements, chapters can participate locally in Community Health Charities or United Way campaigns. Chapters become active locally by attending Community Health Charities meetings, attending the local kick off parties and distributing literature about The ALS Association during the fall campaigns. There may also be opportunities for speakers to address employees at the campaign site to raise awareness about ALS and the work of the local chapter.
The campaigns are held during the fall at many corporations around the country. Federal employees can donate to The ALS Association through the Fall CFC (Combined Federal Campaign) by checking off #0501 (The ALS Association) on the donor pledge forms, or contact your local chapter to ask about the local chapter code number. By spreading the word about The ALS Association during your workplace giving campaign, you can increase donations to The ALS Association from your co-workers. If you have any questions about federated workplace giving campaigns, contact The ALS Association Community Services Director Nancy Venner at (610) 941-6543 or email..
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