Why participate in ichthyosis advocacy?
Being a rare disease, ichthyosis is not well recognized, understood or researched. Often it is up to the affected community members themselves to explain the compromises of their day to day lives and raise awareness so that they too can live as productive lives as they wish. Increased education of your local community and elected officials is merely a phone call or email away and can help lead to better quality of life for ichthyosis patients, better treatments and a possibly even a cure.
ICHTHYOSIS AWARENESS MONTH
FIRST celebrates Ichthyosis Awareness Month (IAM) during the month of May each year. Members and families join together and organize special events, sales and online awareness efforts to educate the community and generate awareness with neighbors and friends. These events can be simple awareness campaigns, like sharing a personal story of ichthyosis on a blog, mentioning FIRST on facebook, distributing pamphlets to friends or handing them out at local retailers - all in an effort to educate people about ichthyosis. From a bake sale to an exquisite gala, large or small scale fundraising efforts can also help to raise awareness as well funds for the FIRST organization and the important research they support.
Volunteering can be as enjoyable as it is rewarding. Often FIRST offers opportunities for members close to the national office to help us with a project or special event. Coordinating a local event, assembling FIRST marketing materials, or even stuffing envelopes for a grassroots campaign can be a tremendously supportive! There are also, occasionally, projects that can be offered for members across the country as well.