Roommate Needed

Hello all,

I am a veteran to the Rett Syndrome community and I live in Washington State just north of Seattle.

My daughter Lindsay has been living in a home for several years that her father and I purchased and remodeled. It is a spacious rambler with a large bathroom that will accommodate a shower chair. Lindsay has had roommates and caregivers but they moved out this past summer when the care giving agency was unable to follow Dr's orders after Lindsay was hospitalized twice. Lindsay has been in the home by herself, with 1:1 care by an agency named Visiting Angels. Her health has improved dramatically and emotional health has improved as well.

We has been looking for a suitable roommate for Lindsay since the move in September. Department of Developmental Disabilities has stated they are unwilling to continue funding this level of service and Lindsay will has to move possibly next week.

Lindsay was diagnosed at 2 years of age by Dr Rett. Her father and I were Regional Reps for IRSA for several years and attended many IRSA conferences. In addition I was on the board of Northwest Rett Syndrome Foundation and served as President.

Lindsay is a petite 26 year old. She does not have seizures and can walk with help. She continues to need help with everyday activities so she has 24 hr caregivers. Lindsay loves to get out and go swimming, shopping or out to eat. Lindsay would love to share her home, a beautiful large rambler with another young woman. I think a roommate with Rett syndrome would be a perfect match.

If you are interested in discussing this further, please contact her mother, Mary ASAP

c 206 696 1098
h 425 673 06701
email mvspringer2002 @yahoo.com

Thank you so much,

Mary Springer

A Successful Event and Some Sad News

The NWRSF Rhythm For Rett event on May 3rd was a resounding success. The turnout was excellent, the meal was delicious, and the dancing was great entertainment. Dr. MacLeod gave an overview of his research work to the attendees, tying the main themes of his project with the majesty of the traditional dancing. The NWRSF raised about $7000 from this event, all of which will go toward the University of Victoria research team. We'd like to thank everyone involved in this event including the Navarasa School of Indian Dance, the Tuality Educational Center, and most of all, Dr. Sudge Budden for making all of the arrangements.

The NWRSF would also like to send our condolences to the Granger family on the passing of Jenaya Granger this May. Jenaya's friend Hannah Williamson, whom many of you will know from our recent conferences, helped us put together a tribute page for Jenaya. I remember personally that Jenaya was one of the first girls with Rett other than my own daughter that I met at my first NWRSF conference. We'll miss you, Jenaya.

Conference Dates and Upcoming Fundraisers

The NWRSF conference is to be held in Federal Way, WA (a suburb south of Seattle) from July 31 to August 3, 2008. The keynote speaker will be Kathy Hunter, the founder of IRSA. We have many other speakers and topics lined up, as well.

Once we have a completed contract with the hotel and have negotiated room rates, we will post registration information on the site. As we complete the conference schedule, we will post this, as well.

We will be having two major fundraisers prior to our conference, so save the dates. The first will be an Indian dance and dinner event on May 3rd at the Tuality Hospital Center in Hillsboro, OR. Dr. Budden is sponsoring the evening, and it promises to be an exciting event. Again, we will post more details as the event gets closer.

Our other event will be a golf outing on July 12th at the prestigious Elkhorn Golf Club near Salem, OR. Tom Snyder and Joey Razzano have worked hard to put together a special event, and we hope to see you all there.