Last night I had the strangest dream. You know the one where someone called wanting information about Noonan Syndrome. It seems they had just been told that their child had Noonan Syndrome. Or was it the baby they were expecting would have Noonan Syndrome? Or maybe it was an adult with Noonan Syndrome who had just found out they were not alone, more people just like them existed. I had to tell them that The Noonan Syndrome Support Group, Inc. no longer existed and the information package, news letter and parents guide was no longer available. I had to tell them our web site had been shut down, our list serve no longer active, and, oh yes, our list of contacts could not be sent out. Meeting? We used to have one, but due to the lack of funds could no longer continue this activity.

The promise?

You see, people who had promised to make a contribution, had for whatever reason not sent one. Yes, maybe they forgot. Maybe some people did not want to ask their friends to help The Noonan Syndrome Support Group, Inc. Let’s face it, we’re a small group. We only sent out information about Noonan Syndrome.

Of course, the caller became indignant. How could people promise to help and then not follow through? I tried to explain to them that people had other priorities and most people had good intentions, but once they got what they needed they forgot to follow up. They forgot to send in that contribution. Maybe they did not realize that their contribution would have been used to make more packages, pay postage, and cover other expenses. Maybe they also forgot to fill in the other information. They did not have the time nor the desire to be part of this little group.

Those who make a difference!

The group did have some people that were the exception. There was the mom who asked her daughter’s day care provider to sell candy to raise funds, the grandmother that asked her employer if she could have a bake sale at work and then got her friends involved, and the family in Iowa who gave their support to all the groups activities. These people make The Noonan Syndrome Support Group a priority in their lives. What about the mom who sent in two $1.00 bills hoping to help, giving what she could afford. Oh, and let’s not forget the people that reached deep into their pockets and made financial contributions. Not once, but multiple times. What about all the wonderful people that volunteered to be state representatives and sent information to doctors telling them about our group. Within the group, we had people that when asked would go that extra mile. They sent in recipes, or offered to sell raffle tickets or candy.

The follow up?

Things that on their own may not have seemed like much to them, but combined with other peoples efforts made a difference. What about the family that felt strong enough about an issue to sponsor a speaker at our international meeting? Let’s not forget about the doctors who agreed to come to Baltimore, Maryland and speak at our meeting. Also, just as important were the people that filled out a renewal once a year and sent in yet another contribution. These were the people that made a difference. These were the people that remembered the feeling they got the first time they talked to another human being that had heard of Noonan Syndrome. These people must have asked themselves how important is it? What can I do to make a difference? What is this group worth too me?