Oct 03 2012

Survivor Spotlight – 2006 SCTA Conference

2006 SCTA Conference
by SCTA Volunteer Joanne Glossner Jaeger

People from all over the country attended the SCTA conference, held in Baltimore MD in August 2006. Some of the many attendees were: Valerie Burnett (screen name:Valerieb) from Nevada; Missy Mandel (missym) from Toronto, Canada; Jeff Snyder (kennedy’sdad) from Connecticut; Terri Bsullak (SkiJunkie) from Virginia; Winona Skidmore from Kansas; Karen Altman (Karen) from Pennsylvania; Joan Friedman (joand) and Carol Ogsbury (Firebirdco) from New York, and myself, Joanne Jaeger (joanne) from New York.

In our free time, some of us toured the city, enjoying such sites as the Inner Harbor, Aquarium, and Science Museum. I took in a Baltimore Oriole’s baseball game at Camden Yards with my family, and went to Babe Ruth’s Birthplace Museum. We all enjoyed a group dinner at the Legal Seafood restaurant in the Inner Harbor, where we got to know each other a little better.

Overall impressions of the conference:

Valerieb: I thought it was absolutely wonderful; I enjoyed meeting everyone and hearing the stories, getting the information from the presentations

Missym: A+++ best line up of speakers ever

kennedy’sdad: Great

SkiJunkie: Excellent!

Winona: Very Good


Joand: I thought the conference was excellent, very worthwhile

Firebirdco: Very well organized and run


How we can make it better in the future:

Valerieb: Maybe a little longer time for some of the presentations, I think some of the doctors needed more time to really get us to understand their thoughts and the future

Missym: Attendance!!

kennedy’sdad: Higher attendance

SkiJunkie: More time to just hang out with folks

Winona: Maybe just more time to socialize with others

Karen: Speakers on exercise, PT, OT, how people handle their disabilities

Joand: Would be wonderful to have more physicians attending

Many of us agreed that that the best memory of the conference was the last session, after the speakers were finished, when we went around the room and told our stories. All attendees also received an SCTA Teddy Bear and poem. We definitely need to make more time for sharing personal stories in future conferences! That is what our group is all about.

Valerieb: The point when the mic was passed and everyone was able to relate their stories and thoughts to the group, and also lunch and dinner with the gang

Missym: Passing the mic around at the end of the conference

kennedy’sdad: Dr. Jallo’s research & attitude

SkiJunkie: Seeing people again from the 1st conference, and I met Dr. Green who later looked at my MRI and said I DON’T have a spinal cord tumor!

Winona: I’m always impressed with the professionals that take the time and interest to be with us.

Karen: Meeting everyone and discussions with members on problems they face daily.

Joand: Receiving my teddy bear. It was a very special gift and saw me through a couple of bad days since then.

Firebirdco: Getting to know other attendees


What did you seek to achieve by attending the conference?

Valerieb: I wanted to finally meet everyone who provided such support, inspiration and a shoulder over the years. I wanted to meet my friends.

Missym: I am always interested in learning more about SCT’s

kennedy’sdad: Uniting together – to get more funding & attention to finding a cure, we need to pull together and create a movement

SkiJunkie: Talking with others with similar symptoms

Winona: Learning from the speakers any new information to help us deal with our physical problems and what progress is being made in that direction. Also being with other SCT survivors. It’s always good to be with others who know and understand what you’ve been through and maybe pick up on ideas on how to cope.


Joand: Wanted to connect with others with similar problems and get as much information as is available. I still have a lot of questions, but it was definitely worthwhile.


Everybody enjoyed the conference so much, and was eager to share their suggestions for next conference, although, it looks like we are going to have a tough time picking a city to host it. Many of us have ideas about where it should be held:

Valerieb: Linda and I talked about the option of having it in Miami next time and if so we could go for a group tour to The Miami Project to Cure Paralysis. Also to try to get a little more time for some speakers

Missym: Have it in Toronto

SkiJunkie: Plan some meals and fun activities to do together

Winona: A time to break into groups to discuss personal stories and how each copes with daily life situations.

Karen: Location more central, like Chicago, healthier break food, Two day seminar which includes meet and greet, dinner at hotel

Joand: Make it an annual event


We all are in agreement about the funny part of the conference:

Valerieb: when Kelli Young made us walk around and share sexual perception cards. Boy that was an ice breaker – maybe that should be first next time!

Missym: My sister bringing out the sex toys to show!

SkiJunkie: Watching people play with sex toys!

Winona: I enjoyed Kelly’s presentation. She gave a very good talk tied in with enough humor to make it comfortable. We rode to Legal Seafood in a cab held together with duct tape!

All in all, the conference was a wonderful memory for all who attended. We all received great support, advise, and learned a lot. I even got up the nerve to try skiing again, after talking to Terri! That alone was worth the trip down. We all look forward to the next conference, and thank the planning committee for a wonderful job!