Northwest Rett Syndrome Foundation

New NWRSF President

2009-12-16T20:58:00.000-08:00

After several years of strong leadership to the organization, Jack Bennett has stepped down from the presidency of the NWRSF. Although no longer the president, Jack will continue to be active in the organization, and we can all look forward to seeing the Bennetts at our annual meeting this summer.

Our new president is Jay Weimern. NWRSF members will know Jay and his wife Salinda as long time active members. Jay is made it his goal to continue providing an accessible and fun conference for our local families each year, as well as to spend 2010 updating our members list and reaching out to local families and professionals who treat people with Rett syndrome.

In other board news, Gary Kostenko is the new NWRSF vice president, replacing Salinda Weimern. We are also welcoming new board member Adam Cramer for the 2009-10 year.

Conference Speakers

2009-04-25T19:27:00.000-07:00

Here are the listed speakers for our annual meeting August 6th-9th, 2009:

Rett Syndrome 101 – Dr. Mario Petersen

Rett Siblings – Kathy Schnebly

Education for the Young Child – Joey Razzano and Robyn Skupa

Transitions into Adult Living: The Friendship Project – Denise and Glenn Lawson

Integrative Care for Rett Syndrome – Drs. Matt and Molly Brignall

Special Needs Transportation – Tammy Franks

Literacy – Rose-Marie Gallagher

Care for the Caregiver – Jocelyn Goodall and Joey Razzano

Child Care/Respite for Young Children – Joey Razzano and Robyn Skupa

Problem-Solving Car Safety – Tammy Franks

Transitions into Adult Living: Our Journey to L’Arche – Glenn Lawson

Special Citizens’ Registration Program – Salem Police Department

Update on Current Research – Drs. Patrick MacLeod and Sergio Ojeda

Sleep Disorders in Rett Syndrome – Dr. Manisha Witmans

Respiratory Disorders – Drs. John Bissonnette and Manisha Witmans

Dental Needs and Oral Health – Dr. Peter Lax

Tone Management in Rett Syndrome – Dr. Mark Shih and Jocelyn Goodall

Emotion and Behavior in Rett Syndrome – Dr. Sudge Budden

ARC Special Needs Trust – Mitch Teal

Osteopathic Manipulative Techniques – Dr. Marc Huston

Personal Care and Training – Joey Razzano

Body Mechanics when Handling and Lifting – B.J. Peterson

Having a Rett Sibling – discussion facilitated by Kathy Schnebly

Note that this list is preliminary, and there may be minor changes prior to the meeting.

Roommate Needed

2008-12-13T20:31:00.000-08:00

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

2008-06-08T18:59:00.000-07:00

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

2008-01-21T22:48:00.000-08:00

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.

Research Announcement

2007-11-02T12:59:00.000-07:00

The NWRSF has decided to partially fund a research project under the supervision of Dr. Patrick McLeod at University of Victoria. This exciting new project is assessing a new method of delivering intact MECP-2 into the brain of laboratory animals, with the expectation of moving into clinical application in the near future. Check back soon to see a detailed explanation of the experiment and how it could potentially benefit your child.

Seaside Conference

2007-08-19T22:03:00.000-07:00

Last week, the NWRSF sponsored our 2007 conference at the Seaside Convention Center in Seaside, OR. We'll have a full recap posted soon, but here are a few of the highlights:

The board of directors presented a check for $10,000 to the foundation from the Trager Corporation. The money was raised in a charity auction hosted by football star Terry Bradshaw earlier in the summer. This generous grant will go a long way toward making our conference next year a big success.
We announced that the 2008 conference will return to Washington State. We will be making a formal announcement about the time and place when we finalize the conference center paperwork.
An article about the NWRSF conference appeared in the Seaside Signal this week. Here's the link. The part about the splashing is particularly apt, as anyone who attended the aquatic therapy will surely remember.

Check back soon for a full report, including pictures. Thanks to all of the families and presenters who helped make this year's conference a success.

Site Updates

2007-07-06T20:52:00.000-07:00

Please excuse the mess - we are in the process of transferring our website to a new server. The good news is that we will be expanding the functions of our site. Some of the new features we are considering include:

a chat room to keep in touch between conferences
a Paypal account to update your membership dues and to receive donations
personal pages to honor your family with photos and tributes
more frequent news updates
direct email access to the foundation

If you are interested in these or other features, please leave a comment below.

Reminder: Hotel Registration

2007-07-06T20:48:00.000-07:00

The last day to register for special room rates at the Seaside Holiday Inn is July 12th. Call 503-717-8000 to reserve your room today.

Conference Schedule

2007-07-06T20:37:00.000-07:00

22nd Annual Conference of the Northwest Rett Syndrome Foundation

“Expanding the Boundaries”—
Identifying and Using Resources

Sunday, August 12

6:00-9:30 Registration and informal reception

7:00-8:00 Concurrent cracker barrel sessions
Parents and families of preschool children
Parents and families of children 6-12
Parents and families of children 12-18
Parents and families of children 18+
Grandparents of Rett children

Monday, August 13

6:00-8:30 Continental breakfast at the hotel

At the Seaside Convention Center:
8.45-9:00 Welcome and Introduction
Jack Bennett

9:00-9.45 Rett Syndrome: Clinical and Research Update
Dr. Patrick MacLeod

9.45-10:00 Questions and discussion

10:00-10:15 RSRF meeting update
Dr. Sudge Budden

10:15-10:30 Break

10:30-11:00 Update on research at the Oregon Primate Center
Dr. Sergio Ojeda

11:00-11:15 Questions and discussion

11:15-11:35 Eye Tracking: Research and Applications
Dr. Nigel Livingstone, University of Victoria

11:35-11:50 Questions and discussion

12:00-1:00 Lunch provided

1:15-2:30 Scoliosis and Orthotics
Panel: Dr. Ivan Krajbick, Dr. Sudge Budden, Jocelyn Goodall, P.T., and Megan McCarthy, C.O.

2:30-2:55 Hippotherapy
Bobbi Culter, P.T.

2:55-3:15 Aquatic Therapy
Jeanne Baldwin, P.T.

3:15-3:30 Break

3:30-4:30 Demonstration of aquatic therapy in Holiday Inn pool

4:45-6:00 Rett 101: Dr. Budden meets with new families

Dinner on your own

8:00-??? Women’s Night to be Pampered
facilitated by Linda Burr and Kandy Hallstrom

Tuesday, August 14

6:00-8:30 Continental breakfast at the hotel

At the Seaside Convention Center:
9:00-10:15 Managing Transitions: When a Rett Girl Turns 18
Guardianships and Special Needs Trusts: Heather Gilmore, attorney
Parent panel: Gary Kostenko (Alaska), Cindy LeMire (Oregon), Salinda Weimern (Washington), Sharon Nichols (Idaho), Gene Valeriote (British Columbia)

10:15-10:30 Break

10:30-11:00 Traveling with Disabilities
Ron Heagy

11:00-11:45 Nutrition and GI Issues in Rett Syndrome
Claudia Sage, Ph.D., dietician, and Dr. Sudge Budden

12:00-1:30 Lunch provided
ANNUAL BUSINESS MEETING

1:45-2:30 Rett Siblings
Kathy Schnebly, Easter Seals

2:30-3:30 Concurrent cracker barrels:
· Sleep and Seizures
Dr. Sarojini Budden

· Equipment
Jocelyn Goodall, P.T.

· Medication and Naturopathic Alternatives
Matt and Molly Brignall

· Rett Syndrome and the Mature Woman
Dr. Patrick MacLeod and Gene and Mary Valeriote

3:30-6:00 Free time

6:00-9:00 Dinner provided
Keynote speaker: Ron Heagy
Hurumbai and silent auction
Raffle drawing

9:00-11:30 Dads’ Night Out
facilitated by Ron Heagy

Wednesday, August 15

6:00-8:30 Continental breakfast at hotel

At Seaside Convention Center:
9:15-10:00 Practical Suggestions for the Management of Drooling
Cindy LeMire

10:00-11:30 Osteopathic Manipulative Techniques
Dr. Marc Houston, Salem Hospital and OHSU, and Dr. Koulabali

11:30-11:45 Closing remarks