July 12-15, 2018
Red Lion Hotel on the River – Jantzen Beach
Portland, OR
2 days and a half days of learning, sharing and getting up to the minute information about Rett Syndrome.
Book by 6/20/18 to get NWRSF room rates at the hotel. Call (503) 283-4466 and mention you are attending our conference.
Schedule:
Thursday, July 12
5:00 – 7:00 – Meet and Greet Ballroom Hallway
Friday: July 13
Respite opens at 8:30 – Multnomah Room
8:30-9:15 Registration and Auctions/Raffle Drop off.
9:15 Welcome – Troy – Mt St. Helen’s Ballroom
9:30-10:20 – CBD and Seizures– Dr. Steven Phillips
10:30-11:20 – Dr. John Bissonnette – Sarizotan Study and Treatment– abnormal breathing
11:25- 12:20- Panel Discussion – Troy to Moderate
PT – Kerry Michaelis – OHSU
OT – Kimberly Solondz – OHSU
SLT- Cynthia Green – OHSU
12:30-1:30- Lunch. Sharing of cool ideas, tips and tricks (Troy to moderate)
1:30 Respite opens
1:45-2:25 – Dr. Gail Mandel – Genetic Treatment of MeCP2*
2:30–3:30 Doctor Q & A- Dr. Mario Petersen, Dr. Gail Mandel, Dr. John Bissonnette, Dr. Steven Phillips,
3:30 Respite closes
3:30-5:30 free time
5:30 -7:30 Respite Opens for 2 hours only – Multnomah Room
5:30-7:30 Parents Night Out. JB’s Nightclub and Lounge in Hotel
9:00 -12:30 Siblings in Jantzen Room
1:30 – 3:30 Siblings in Jantzen Room
5:30-7:30 Siblings in Jantzen Room
Saturday: July 14
Respite opens at 8:30 – Multnomah Room
9:00-11:00 Siblings in Jantzen Room
9:00 – Opening Remarks – Glenn – Mt St Helen’s Ballroom
9:15-9:55-Dr Mary Jones Clinical Trials Update
9:30-11:00 Sib Shop – Jantzen Room- Kathy Schnebly & Courtney Casey SIBS ONLY
10:00:10:25 Dr. Mario Petersen What to do until we get a cure
10:30-11:10 Christina Gagnon- ABLE ACT
11:15-11:45 Group Picture
11:45-12:45 Lunch and General Meeting
1:00-1:35 Dr. Mary Jones – Surgery & Anesthesia
1:40-2:30 Sibling Panel – with Kathy Schnebly and Courtney Casey
2:35-3:15 – Cracker Barrels
1) Cracker Barrel – Communication Devices –Julie Peterson- Pendleton Room
2) Cracker Barrel – Parents Questions concerning Siblings with Kathy and Courtney – Jantzen Room
Respite Closes
3:30-4:30 Beauty Time – White Stag Room
4:45 Bar Opens, Silent Auction/Raffle Opens
5:45-7:00 – Dinner
6:45 – Silent Auction/Raffles close 2 Live Auction Items
7:00 – Winners announced
7:15-9:00 – Dance with DJ Roth
Sunday: July 15
8:30 Respite Opens – Multnomah Room
9:00 Opening Remarks – Gary – Mt St Helen’s Ballroom
9:15 – 10:15 – Dr. Mary Jones – Natural History Study
10:25 – 11:25- Dr. Steven Phillips – new Study on Seizure Control
11:30 Closing Remarks – Troy
11:45 – Respite Closes