Lissencephaly Conference 1999
For those of you that weren't there, there was one large room
(Grand Ballroom) on the 1st floor of the hotel where we ate, the doctors and others spoke,
and the evening entertainment went on. This room accommodated the 100 familes that
attended the Get-Together. There were 3 separate rooms, also on the 1st floor, for
additional meetings. There were speeches and seminars as follows. The daycare was on the
lower level and included several rooms (one for napping, one for Toddlers, etc.). The
people that watched the kids were outstanding. They were so willing to help in any way
they could. They gave the kids one on one attention. The doctors and their clinics were on
the 19th floor of the hotel. A schedule was posted as to when each family had an appt with
the doctors. The doctors had over 60 familes on their schedules, but they saw many more
familes one-on-one to discuss scans, records, and diagnoses. We didn't see much of the
doctors because they were so busy trying to meet everyone. It was nice of them to give
their entire weekend to making speeches and seeing familes. SEE schedules as follows and
more info after the schedules:
Friday:
7:30 am Registration and Breakfast
8:00 am Opening Ceremonies
9:00 am Introduction to Lissencephaly & Related Birth Defects, Dr William B Dobyns, MD
10:00 am Recognition & Management of Seizures, Dr Dobyns and Dr Renzo Guerrini, MD
11:30 am Lunch
1:00 pm Sensory Integration, Donna Ingram, PT, MS, and Christine Veres, OTR
1:00 pm Dealing with Grief, by Healing Matters with Jinny Robinson, RN, BSN
2:00 pm General Pediatric Care, Nancy Dodge, MD
3:30 pm Oh, This LIfe - A Group Just for Moms
4:00 pm How to Make A Switch Toy - A Workshop for Dads
5:00 pm Dinner
6:30 pm Evening Entertainment (Santa and Mrs.Claus handed out toys to all kids, and 50's
Night - DJ playing 50's music for dancing)
Saturday:
7:00 am Breakfast
9:00 am Overview of Laboratory Diagnostics in Lissencephaly, Dr David H Ledbetter, PhD
10:00 am Genetic Counseling For Lissencephaly & Related Malformations, Patti Mills,
M.S.
11:30 am Lunch
1:00 pm Dental Care, Kyle House, DDS
1:00 pm Does Life Go On?, by Healing Matters, with Jinny Robinson, RN, BSN
2:30 pm Transportation Needs & Equipment for Special Needs, Michael Murphy
4:00 pm Fun & Games with Shanna - How to Play with Your Children, Shanna Gray
5:00 pm Dinner (Barbecue ribs, chicken, corn, etc)
6:30 pm Closing Ceremonies, of which, included distriuting gifts for Raffle Drawings,
Gifts Given to the Doctors, Dianna, Stan and Linda Howe, and others that helped with the
Get-Together, gifts for those whom had to fly the farthest for the Get-Together, etc.
8:00 pm Evening Entertainment (Texas Theme, Line Dancing, etc.)
Break-Out (Separate) Sessions on ILS/MDS, LCH, SBH, WWS, Microlissencephaly, occured
throughout the day, where you could ask the doctor questions.
Sunday:
7:00 am Breakfast and Goodbyes
They also had separate actvities all day Friday and Saturday for the kids (siblings and Liss kids) to exercise, movies, story times, craft making, arts and crafts, games and prizes, a separate kids pow wow, etc.
There weren't many handouts, just the brochure we received at
the initial registration that listed what is on this page and some more info (write-up on
doctors, ads people paid for to help produce the brochure, a dedication page to Shaun
Fitzgerald (Dianna's husband that passed away). There was one other handout, "The
Lissencephaly Research Project" that mentioned the research that the doctors are
doing, the doctors involved, and the clinic. It's an overall write-up on when the research
started and how the clinic will help you.
These announced at the closing ceremonies that the CPA, Paul Walters, is now the
Treasurer. Debbie Bloor is the Vice President and Secretary (I think), and added 2 new
people to the Board of Directors to help Dianna with the load of the network due to it's
growth.
The Greer family gave every child and angel pin...very nice. We were all given name tags
to where with our name and city, state/country. We were also given a coupon for a free
T-shirt. Lissencephaly Network was selling T-shirts, hats, etc. Janet Rouseau had a booth
to sell her book, "Life After Grief", there were booths (information and
purchasing) of Infamil, Wheelchairs, strollers, tumbleforms, etc. Several wheelchairs that
were donated, were given away free to families. There was a blood booth set up for about 3
hours Saturday to draw blood for those familes that the doctors indicated they would like
to have blood from. There may have been a couple more booths that I have forgotten to
list. The decorations for the Grand Ballroom were very nice. The swimming pool at the
hotel was VERY nice.
The picture boards (with pictures of many of the kids and their diagnoses) were displayed,
thanks to everyone for sending pictures and all the compliments.