Organization and the Way Forward: Lessons from the Chromosome 18 Organization

Jannine Cody, Ph.D. - Chromosome 18 Registry and Research Society

The Chromosome 18 organization is very well set up to be able to assist families and individuals with a c 18 abnormality.

Create a plan to individually help the organization.  Garage sales and bake sales will do more than writing to Bill Gates for help.

He daughter’s diagnosis was like much of ours.  Very bleak outlook presented by the medical community.

The Chromosome 18 Registry - To help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead to happy, healthy and productive lives.  They now have over 2,000 member families

They have a five member executive committee.  They act as a nominating committee to add coordinators for the rest of the board positions.  They have regional coordinators and each chapter has a budget.  Each member family has annual dues they pay to the organization.  They raise funds and hold an annual get together.

An office can be helpful so there is a central location for fund raising, communications, record keeping, etc.  Centralize all of these operations.  Once funds are sufficient, hire someone to perform these functions.  It may start with a very small part time role.

Be very financially responsible.  The 18 organization still uses the back side of each piece of paper.

Organization wide fundraisers Annually: 

Phantom Tea - tea party for individuals who may or may not personally attend.  The invitations are sent on behalf of an individual child in the group.  Each family sends five invitations to their friends along with a picture of the child and a little tea bag.  Held in December to coincide with the end of the tax year.

Regional charity golf tournament - have hole sponsors, sell mulligans, hole in one prizes for cars, have some prizes, but it’s not a true competition.  Ask for donations.  As a rule, don’t pay for anything.

Birdies for Charity - organizations that actually help raise money for organizations by counting birdies in a given golf tournament.  You can have your neighbors and friends pledge and the organization will do all the office work.  You just get a check in the end.

Corporations have money that has to be spent on charitable causes.  Why not ours?  Open up and approach them about it.

Regional fund raisers are smaller and can be whatever people are interested in.  Pampered Chef parties, dinners, comedy night, garage sales, etc.

The organization accomplishes their mission through:

Service - annual conference, meetings,

Education - Congressional testimony, find the appropriations committee members, Don’t underestimate the power of meeting these people and contacting them.  Promotions, Presentations (bracelets, pins, pens, brochures for fundraising and membership), raise awareness

Align with other Chromosomal Abnormality groups because we are stronger together.  

Research - Finding answers.  It’s about science, not black magic and we can find the answers.  Find ways to make things as right as we can.  No one cares as much as we do.  Rules to contact and study the families.  Must obtain the consent form.  Manage that at the organization level.  Establish a centralized research center so all the data for different things are together and a critical mass of useful patient information can be achieved.  The C 18 organization has a great deal of research resources and staff available.  Data analysis staff to compile the surveys into useful info for the families.

To reach everyone we must use the physicians.  This must be in the medical literature.

The greatest reason to have a conference is for the siblings of these affected kids.  Our kids will outlive us and it’s essential that the siblings will be there.  There is a focus group for the “sibs” every year for them to talk and solve problems.  They have needs too.  Survey the sibs to see what they understand and what they still need to learn.  Some sibs think “Will I catch this too?”

If it’s going to be, it’s up to me!

“If you don’t know where you are going you might end up someplace else.” - Yogi Berra  The goal is a cure.