Share and Care Fundraising


CS FamilyShare and Care Cockayne Syndrome Network is a nonprofit organization run entirely by unpaid volunteers. Most of these volunteers are family members or close friends of family members with children who have CS. There are several goals of the organization that require us to have financial support throughout the year.




There are several ways to raise funds for Share and Care. One of our biggest fundraisers is simply termed, “The Butterfly Walk.” An event day, time, and location is set by the CS family that is heading up the walk in their area. Sometimes event locations require proof from Share and Care of insurance in case of an accident. We provide proof of that when it is required. In addition, the CS family hosting the walk will set up a fundraising page with our assistance and set a goal for the total amount raised. Then the walk is promoted by the CS family through emails, social media, flyers, and word of mouth. It is also good practice to contact your local newspaper and television stations for extra exposure.


The rest of the walk is up to you. Many families offer refreshments at their walks and can get local businesses to donate goods for the event. It is good practice to give businesses credit for their donations by having their names printed on the backs of your walk T-shirts. Walk T-shirt designs will be provided for you and can be made for you by Share and Care. If you have a special design in mind and/or your own vendor you prefer to use for T-shirts that is fine too. Just make sure to let us know how you prefer to create your walk T-shirts.

1. Provide rooms, food, and activities to all immediate family members who attend the 3-day Share and Care Annual Medical Conference. These conferences connect newly diagnosed families with “seasoned” families with CS. These also provide families the opportunity to hear doctors from all over the country who work with and research CS and other related disorders. Doctors see each and ever CS child individually during the conference and consult with parents about trends, treatments, and quality care. There is no charge for these consultations to families.

2. Fund ongoing research to find a cure for CS.

3. Pay for funeral expenses at times when families can not afford to bury their children.

4. Pay for medical expenses that insurance will not cover and/or that families can not afford to pay.

5. Pay for certain medical supplies and/or therapeutic aids that would greatly improve the quality of life for CS children when insurance will not cover and/or families can not afford to pay.

You can make your event special by releasing balloons or butterflies or simply blowing bubbles into the air in remembrance of CS children who have passed. This is an emotional experience that participants seem to enjoy doing either before or immediately following the walk. The amount raised with a Butterfly Walk may vary but on average families usually raise anywhere from $3000 to $7000 for one walk.

Other fundraising ideas are as follows:

1. Grow a beard for as many days as people will donate money.

2. Hold an event with a theme and target a certain population of people. Require vendors to rent tables for a set price and sell tickets to the event with all proceeds going to Share and Care.

3. Encourage people to donate to Share and Care in celebration of special events like birthdays, angelversaries, Christmas, etc. instead of giving other types of gifts.