Grassroots Fundraising



Thank you for your interest in helping to raise awareness about ichthyosis and in raising funds to support FIRST’s valuable programs and services.  This page is designed to give you information about planning a successful grassroots fundraising event and media awareness campaign.  This information is provided as a useful tool to help plan your event, but can be modified to suit your needs.  There is also a wealth of information available from other resources, such as internet searches and community organizations.

During the review of this information, or anytime during the planning of your event, please contact the national office staff if you have any questions, ideas, or need guidance.  FIRST’s staff is readily available and very willing to help.

Finally, once you have made a decision about which event you will be hosting in your community, please be sure to review and complete the Authorization Forms and send a copy to the national office.  Once we receive your information, we’ll do everything we can to help make your event a success.  We can work to publicize your event.  We can help determine whether a state permit or license is necessary for your fundraiser, and help file any necessary paperwork.

Why Raise Funds?

While it is not unusual for those of us in the ichthyosis community to feel overwhelmed, FIRST is here to tell you that there is hope.  Medical and scientific research holds the promise of better treatments and, one day, the possibility of a cure. One of the most important things that family and friends in the ichthyosis community can do is raise money to support research and the programs and services of FIRST.

So many aspects of this disease are beyond our control, but our ability to raise money is not one of them. There have been great advances in understanding the mechanisms of the ichthyoses, but more needs to be done if we are to find a cure.   We all have a vested interest in making this happen.  The sooner you begin to raise funds to support the Foundation’s work, the greater likelihood your loved one(s) will benefit.

Whether you raise $5 or $5,000, the important thing is that you do something. It’s not as difficult as you may think.  People will want to help.  The hardest part is getting started, and that’s why this fundraising booklet has been assembled.  We’ll show you how to turn $18 in out-of-pocket expenses into $500 of donations (with only a few hours of your time). 


Fun, fun and more fun!  That is the bottom line for all grassroots fundraising events.  Most people can quickly find reasons not to do something they don’t want to do.  If you want to succeed, you must choose an event in which you and your friends will enjoy being involved in. This will create the most energy, enthusiasm and fundraising dollars for the Foundation.  Plus, it will be a more rewarding experience for you!

The three primary reasons for hosting a fundraiser/media event are:

  • To promote education of ichthyosis and the related skin types
  • To raise funds for the important work of FIRST
  • To bring people together to socialize and have some fun

Whenever possible try to choose an event that has the widest possible appeal. Planning an event that will appeal to family, friends, and members of your business community will generate greater awareness and make it easier to meet your fundraising goals.  Your message will reach a wider audience and you are likely to have more fun in the process.

Enthusiasm is your best resource; without enthusiasm everything will become a chore. The more enthusiasm you provide, the easier and more enjoyable all tasks will become. Enthusiasm can be highly infectious.

When choosing a fundraising activity, remember that friends (volunteers) will perform better if they are enjoying what they are doing.  If they feel what they are doing is successful and making a difference, it will help stimulate their motivation. Their motivation can be the key to your success.  Most people will enjoy what they are doing if there is an element of fun and visible success.

Grassroots Fundraising Complete Guide
Table of Contents


  FIRST Night Out at the White Sox
Chicago, Illinois
Wednesday, August 24, 2016
FIRST Champions Celebrates the Benedetto Family
Wantagh, New York
Saturday, August 27, 2016

FIRST Zumbathon
Montgomeryville, Pennsylvania
Saturday, September 24, 2016

FIRST Champions Wine Tasting
Providence, Rhode Island
Saturday, October 22, 2016

  Online Apron Sale
Etsy Online Shop
Jamberry Awareness Nail Wraps


National Office Contact Information

Madeline Bergman, Director of Development

Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)
2616 North Broad Street
Colmar, PA  18915

215.997.9400 -  Phone
800.545.3286 - Toll-free
215.997.9403 - Fax


Download a pdf of the Complete Grassroots Fundraising Guide (43 pages)


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