Support Group Leader Application

Mission Statement

The National Alopecia Areata Foundation (NAAF) supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata.

Dear Applicant,

Thank you for your interest in starting and developing a support group for patients with alopecia areata and their families. The National Alopecia Areata Foundation was founded as a support group in San Francisco, CA in 1981. I am happy to have you join in our tradition of support.

Alopecia areata is an autoimmune disease that currently does not have a cure or treatment that is approved by the FDA. Support is vital to the well-being of those affected by this disease.

I am here to help you get your group started, plan meetings and events, and provide materials. Please use me as a resource. I will gladly recommend topics for discussion and promote your group to the local community. Please take your time to carefully review and complete the National Alopecia Areata Foundation (NAAF) Criteria form, Statement of Understanding and Application form.

Thank you for your interest in volunteering. By helping those in need you will find you can also help yourself in ways you never knew existed. Please feel free to call me at the NAAF office at (415) 472-3780, if you have any questions or email me at judy@naaf.org.

 

Judy Williams
Support & Education Director

"The purpose of the human life is to serve, and to show compassion and the will to help others." Albert Schweitzer

 

What is a NAAF Support group and what do I need to get started? A NAAF support group is a volunteer led group for those diagnosed with alopecia areata and their family members. This group setting will give you an opportunity to learn, share and find acceptance regarding alopecia areata. As a NAAF support volunteer you need to have or have a family member diagnosed with alopecia areata. You will be part of our support family of over 130 volunteers. You are not alone in your endeavor to provide support. We're here to help you. You do not need to have a special education or certain skills to facilitate a support group. If you have the desire to facilitate a group; we are here to help you make it successful.

Thank you for your interest in being a Support Group Leader for your area. We need people such as you who are willing to give their time to help others. Please review the following requirements, complete your application and return to the NAAF office. NAAF's Support Director will then interview you.

A. Be free of any conflict of interest and provide a completed "Conflict of Interest" form each year. If you are employed by a charitable organization or a for profit business selling or providing services to people with alopecia areata, you may have a conflict that would prevent you from serving as a Support Group Leader.

B. Have a phone number with voicemail or answering machine where people can leave messages that you can retrieve and respond within 48 hours. People who call are likely hurting and looking for answers.

C. Donate to NAAF in any amount that you are able; this will ensure you receive the NAAF newsletter. Please share the NAAF newsletter with your group.

D.Inform the NAAF office of any change in your name, address or telephone number immediately.

E. Host at least 4 meetings per year. Please inform the NAAF office at least two weeks in advance of meeting dates (the earlier the better so we can get the word out), time and locations along with a telephone number or email for confirmation. If any changes are expected, please notify NAAF as soon as possible so we may print and post the correct meeting information.

F. Annually provide NAAF with a list of people-including contact information-with whom you are in touch about the support group you lead on behalf of NAAF.

G. Utilize the NAAF name only in alignment with this Criteria and the goals listed in the Statement of Understanding. Your signature on this application signifies agreement.

H. Treat all people connected with the NAAF support group with respect. Establishing respectful behavior creates an environment of trust and safety. Respectful behavior includes allowing one person at a time to speak, using appropriate language and tone of voice, accepting differences and treating each other with kindness in person and through electronic communications.

I. Prominently identify NAAF on any online presence-including websites, Facebook, homepages or postings. Focus on specific factual information about your support group. Should you decide to maintain a Facebook page; or other social media presence please refer to the Social Media Guidelines in the "Social Media/Facebook for Support Groups" form included in this application.

J. Find a local Medical Advisor to serve as a resource for you as the support group leader should medical questions come up that cannot be answered within the group. The medical advisor is not required to attend meetings but are welcome to do so if they choose.

K. Maintain confidentiality of support group meetings - what happens in the group stays in the group. The support group is a forum for sharing. Participants are sharing their personal lives and feelings and all meetings should be confidential unless explicitly agreed as otherwise by all attendees for that particular meeting.

L. Keep a contact list of all attendees with contact information. Send to NAAF Support & Education Director upon request.

M. Listen and connect individuals with this disease and those who care about them.

N. Provide up to date information and a forum to share personal experiences. Sometimes this is enough relieve someone from despair. There are times, however, when you may feel that a person needs professional help. If this happens please refer him/her to the NAAF office or a qualified Mental Health Professional in your area.

By signing this Criteria for Support Group Leaders document, the SGL acknowledges that she or he understands and meets or agrees to follow the criteria as stated in this document. The use of NAAF's name is permitted only after the applicant signs this document and is approved in writing as a Support Group Leader.

 

Purpose

A Support Group Leader is committed to providing a resource for individuals and family members to find emotional, medical and cosmetic support with their alopecia areata.

Goals

1. To offer support to all individuals and their families through interaction with the group.

2. To assist individuals in gaining new positive responses to alopecia areata. Through the group process, alopecia areata may become a constructive force in individual lives.

3. To offer a forum in which individuals may meet with others who have regained self-confidence and self-esteem.

4. To encourage participants to find online support through the NAAF website & NAAF Facebook page.

5. To reach out to other alopecia areata individuals in the community and bring them into the group.

6. To provide information and education to general public about alopecia areata, its causes, treatments, strategies for living well with this disease that has profound psychological impacts. 

7. To provide current medical research updates as supplied by the NAAF office.

8. To be a financially self-sustained entity operated by a petty cash fund.

9. To support NAAF in fundraising for research and support activities, and to be actively involved in the NAAF Public Awareness Campaigns.

10. To participate fully in, NAAF through such actions as offering the NAAF Newsletter to callers, contributing newsletter articles, and communicating on a quarterly basis.

By signing this Agreement, the Support Group Leader acknowledges that she or he understand and agrees with the Mission Statement of NAAF, the Support Group Leader Statement of Understanding and can follow the Criteria for Support Group Leader.

Thank you for taking the time and patience to answer these important questions.

Social Media Mission Statement for Support groups: To provide the alopecia areata community a secure on-line forum for information, positive communication and emotional support. Share, Communicate, and Grow. Please keep in mind that online forums; while set up as private; can be hacked and information can easily be spread throughout the internet. Once it is "out there" it is "out there". I suggest you keep social media posts light in nature and only post information that is relevant to your support group.

Social Media/Facebook Engagement Guidelines: Support Group social media/Facebook sites must be private; with members approved only by the Support Group Leader.

The social media/Facebook page must be clearly titled as part of a NAAF Support Group.

Use respectful language. All opinions will be treated with mutual respect.

Think before you post. This is Facebook, one of the biggest sites on the internet. What goes up may never come down. Respect the privacy of others.

Facebook for support groups is not intended to promote or advertise businesses.

If you plan to comment on another's post, please add to the discussion or conversation. Be friendly, be fair and use common sense.

Monitor all ongoing discussions and ensure they are appropriate for the group.

As the Facebook administrator you will have the ability to deny access to anyone not following the Support Group Facebook rules.

These rules apply to all social media outlets such as Facebook, Twitter, Instagram & Pinterest.

Please share these guidelines with your support group and make sure they understand them before allowing access to your social media presence. This will ensure a positive experience for all. I agree to abide by the Social Media Guidelines.