Participants in the TMIC had been expressing a need to follow on Pam Schechter's lead in New York and request our state legislatures to designate a TM awareness day in states around the country. In deciding the appropriate date, we, again, followed Pam's efforts and attempted to have June 6th be identified as TM awareness day. I approached my state representative with this request. By Concurrent Resolution No. 74, the Ohio General Assembly has recognized June 6, 2000 as Transverse Myelitis Day in the State of Ohio. The Resolution was sponsored by Representative Ron Gerberry from the 65th House District. The purpose of the resolution is to heighten the public's awareness of TM. It recognizes the serious need we have to educate the public and the medical profession about Transverse Myelitis. The resolution also recognizes Rachel Dorocak. Rachel contracted TM when she was six months old. Rachel celebrated her first birthday this past March. Her brothers, Kevin and Matthew, initiated the Reading for Rachel Program to honor their sister. The resolution recognizes the wonderful efforts of the Dorocak family in raising money for TM research.

Reading for Rachel
Cathy Dorocak

When Rachel first got sick last October, we were in such a state of shock and sadness for our baby girl. She was only six and a half months old when TM struck, right when she was just beginning to become mobile. Life had been so good, and overnight all that changed. At the beginning we saw improvements come very quickly and so we were very hopeful for a recovery. But Rachel's progress slowed and we really had to face the reality of our situation and as a family we wanted to do something positive for Rachel and for others who have Transverse Myelitis. More than anything, we wanted a cure for TM so that other families would not feel the same pain and suffering that our family had to endure.

Our sons, Matthew (age six) and Kevin (age four) thought of the actual fund-raising event, called "Reading for Rachel," where all funds collected would go towards research to find a cure. We all needed to channel our energies in a positive manner and the boys wanted this to be the best 1st birthday present they could ever give Rachel! . And it was.

The first thing we did was come up with a letter that the boys helped write. It talked about what happened to their sister, Transverse Myelitis and how families could help. We asked kids in the community to read as many books as they could during the month of March 2000, the month Rachel would celebrate her 1st birthday. We also requested that they ask friends and family to sponsor them for a certain amount per book they read. At the end of the month, we asked them to collect from their sponsors and send the money they collected to the Transverse Myelitis Association, referencing "Reading for Rachel." At first, we emailed our own personal friends and family but also asked them to pass the email to as many people as they could. In addition, we got support from the local school system, by having information about the "Reading for Rachel" program included in all the school newspapers. The preschool PTA, an organization we are very involved in, as well as Matthew's school, put all the materials (letter, reading list, sponsor form) either in its newsletter or in the student's book bags to take home. Matthew's school was very supportive; allowing us to talk to the students on a live TV broadcast that featured Rachel, Matthew and Kevin. They even simultaneously sponsored another program called "Reach for the Stars for Rachel" where kids could buy stars for 25 cents each and decorate them with their name or other designs. These stars were hung all over Matthew's school showing support for Rachel.

In addition to promoting the program in the local school system, we contacted the local newspaper to do a story about Rachel and take her picture so the kids in the community could see whom they were helping. We made the front page with a very large story and even larger picture! Rachel was also on the local CBS news following the airing of Cody Unser's story on 48 Hours on March 2nd. The timing was perfect since the local newscast made reference to the fund-raiser and also gave out the TMA website address where the "Reading for Rachel" materials were available. Our church was also supportive, providing information about our fund-raiser in the church bulletin.

We have received so many wonderful notes and words of encouragement from so many people around the country during this process and above all, we are so very proud of our two sons. The fund-raiser has raised over $6,000 for TM research and this is just the beginning! We will be planning for another "Reading for Rachel" campaign for March 2001 and hope to get the support of many more school systems throughout the country. Not only did we raise funds; we have also raised awareness of Transverse Myelitis in our community - something we have been thanked many times for doing. In addition, this whole project has taught a valuable lesson about helping others in need to so many young people. Together, we can make a difference!

The Reading for Rachel Program: Help Us Fund TM Research
Cathy Dorocak, National and International Chair of the Reading for Rachel Program

As you read earlier in this newsletter, the Reading for Rachel Program was a tremendous success! Considering that we initiated the program with about one month of preparation and were somewhat limited in the geographic scope of our communications, we were able to raise significant dollars for The Transverse Myelitis Association. All of the money raised by the Reading for Rachel Program is designated exclusively for the purpose of funding TM research. And as you are aware from Dr. Irani's article, TM research is already being performed at the Johns Hopkins Transverse Myelopathy Center. It is imperative that we raise significant dollars in order to further this research and to attract other researchers into the specific study of the causes of, and treatments and cures for Transverse Myelitis.

The Reading for Rachel Program represents the first significant activity of the TMA designed for the purpose of raising research funds. We have been so delighted by the positive response to Matthew and Kevin's efforts that we have decided to roll out the Reading for Rachel Program nationally and internationally.

We need your help! We are looking for Ambassadors for the Reading for Rachel Program. Ambassadors play a critical role since they will be the local contacts for this very important fund-raising effort. There is significant competition for good cause dollars. When individuals are deciding what causes and organizations they wish to support, they have many from which to choose. People support organizations that they know and they support causes in which they have a personal understanding and an emotional tie. As an Ambassador, you are the person in the personal with which individuals will identify. Rachel's story has definitely motivated a great deal of empathy in people and her experiences have touched many in the TMA as well. But people who have no knowledge of TM will more easily relate to a person they know of or who lives in their own community. It brings TM that much closer to home.

As an Ambassador, we are asking you to promote the Reading for Rachel Program in the schools in your community. In order to effectively promote the Program, we need to organize our efforts this summer and very early in the school year. School districts and classroom teachers do much of their planning and scheduling in advance of the school calendar year. The Reading for Rachel Program will be competing for classroom time with many different activities, from science fairs to other fundraising efforts. If teachers are going to consider our Program, you are going to need to reach them early.

If you are a school administrator or work for a school district, if you are a classroom teacher, if you are active in a parent teacher organization or association, if you have children in school, if you are a retired school employee, we need you to become an Ambassador for the Reading for Rachel Program. Working with and through people in the schools with whom you have existing relationships is the most effective way to promote the Program. But please do not hesitate to appear at district offices where you do not know anyone; you may find sympathetic and supportive people even where there are no personal relationships.

Gunny is serving as the Reading for Rachel Program Administrative Coordinator. Should you wish to become a Program Ambassador, please contact Gunny as soon as possible.

Richard J. Boyle
4843 Westchester DR 207
Youngstown OH 44515
Phone number: (330)797-9465
GUNNY0011[AT SIGN]AOL.COM

Gunny will provide you with the instructions you will need to promote and initiate the Reading for Rachel Program in the schools in your community. We are grateful for your participation in the Reading for Rachel Program. It is our great hope that this research will result in more effective treatments and a cure for Rachel and for all of you!