Founded in 1981Educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
The Regional Support Network is a place to come together and support each other through the sharing of knowledge, experience, and advice. It is our hope that all who join this caring community will find comfort in knowing that you are not alone on your journey.
Why a Support Network?
Individuals with ichthyosis, and parents of children with ichthyosis, often have never met another person who shares the disorder. This can lead to feelings of isolation. A support network gives people the opportunity to talk to others who have experience living with ichthyosis, and to share their feelings with others who understand.
What are the goals of the Regional Support Network?
The goals of the Regional Support Network (RSN), a grassroots network of FIRST members, is to provide to other members and families dealing with the physical, psychological, and social concerns of living with ichthyosis with the following:
As a region, grassroots and awareness events will be stronger, by gaining the support of the members within the region to work together and support and assist one another. There is strength in numbers, and our Regional Support Network will hold this statement true.
Regional Support Volunteers and Ambassadors
The Regional Support Volunteer connects with other families and shares personal stories and concerns. Members can support each other through the sharing of knowledge, experience, and advice. It is our hope for all who join this caring community will find comfort in knowing that you are not alone on your journey.
How does the Regional Support Network Work?
The calls FIRST receives will be matched with the Regional Volunteer within the region that will be the best fit for the caller. Understanding the rarity of ichthyosis, individuals will be connected with volunteers by disease type within the region and then by social profiles like age, gender, marital status, family size, ages of children, etc. In circumstances when that is difficult, we will work to connect individuals within neighboring regions.
The Regional Ambassador continues to facilitate connections between individuals and families affected with ichthyosis, through hosting annual gatherings or events. Ambassadors are a local resource for individuals seeking information regarding ichthyosis. In particular, Ambassadors are available to support families who have just given birth to an affected infant. Ambassadors maintain and foster connections and relationships with key medical personnel in their area, creating an awareness of FIRST and the RSN and Ambassador Programs.
How does the Ambassador Program work?
The Regional Ambassador will receive a packet of information from FIRST to take to local medical personnel, include dermatologists, as well as first-responders likely to be called in to consult on ichthyosis cases, such as neonatologists and geneticists. The Ambassador can leave direct contact information with the medical group in the event that a baby has been born with ichthyosis and immediate contact needs to be made. The Regional Ambassador organizes a low-key social event 2-3 times a year, inviting all local families and medical personnel as well as local Regional Support Volunteers. FIRST works with the Ambassador to promote the gathering. A Regional Support Volunteer serves as the role of Regional Ambassadors for FIRST.
How can I become involved in the Regional Support Network?
The RSN is managed by FIRST Program Director, Moureen Wenik. All individuals are encouraged to get involved. If you would like to be contacted by a Regional Volunteer or if you would like to become a Regional Volunteer and support other members, please contact Moe via e-mail, or by telephone at 800.545.3286.