P.O. Box 5475 Salem, OR 97304 (888) 326-2185
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NORTHWEST RETT NEWSFEBRUARY 2010MARK YOUR CALENDAR! June 12 5K Run/3K Walk for Rett in Olympia, Washington July 5 Last day for making reservations at Eagle Crest for NWRSF conference August 4-8 “Reflections: A Spirit of Optimism” – 25th annual NWRSF conference at Eagle Crest Resort, Redmond, Oregon CHANGES IN NWRSF BOARD Jay Weimern was elected President of the NWRSF at the Board meeting on Oct. 10, 2009, and Gary Kostenko took over as Vice-President. Adam Cramer joined the Board as a representative from Washington. Contact information for all Board members appears at the end of this newsletter. PRESIDENT’S MESSAGE I am Jay Weimern, your newly elected president. As a parent who has experienced Rett syndrome for 22 years, my goal with the newly elected Board members is to help our new families as well as the families who have been around longer than I have. Medical knowledge, social gatherings and yearly conferences are a few ways we stay connected. The NWRSF will be celebrating its 25-year anniversary at Eagle Crest Resort in August. As an organization, we will continue to encourage the networking of doctors, parents, grandparents, respite care workers, and all who are in some way connected with Rett syndrome. With our new website up and running (www.nwrettsyndrome.net), you can find the latest activities around the Northwest. Jay Weimern NWRSF President TENTATIVE 2010 CONFERENCE SCHEDULE Responding to many people’s preference for more time to relax, socialize, and take in the local sights during conferences, the NWRSF Conference Planning Committee has decided to start this year’s meeting on the evening of Wednesday, August 4, with an informal reception, light refreshments, and a live band. If you’re unable to arrive as early as Wednesday, many of the activities scheduled for Thursday will also give families a chance to get to know each other. Sudge Budden and Paige Neus (IRSF family advocate) will both address all attendees, and crackerbarrel sessions will enable smaller groups, such as grandparents and new parents, to deal with matters of particular interest to them. Thursday afternoon will be open for a group visit to the High Desert Museum south of Bend. On Friday, August 6, the serious science will begin. These are sessions that should interest both parents and people who work with Rett girls. Drs. Sergio Ojeda and Patrick MacLeod will present their annual updates on Rett research, and other speakers will discuss such topics as the management of intractable seizures, augmentative communication, scoliosis, and autonomic dysregulation in Rett syndrome. The final event of the afternoon will take place in the pool, as Jeanie Baldwin once again demonstrates aquatic therapy. A barbecue picnic dinner and dance are scheduled for the evening. On Saturday morning, we’ll hear from a group of Rett siblings about their experience. Then, following a talk on nutritional and bone health in Rett syndrome, there will be a variety of breakout sessions: gastronomy tubes, naturopathic options, transition for the older girl, and group counseling. In the afternoon, we’ll have a demonstration of hippotherapy, and the evening will be set aside for the conference banquet. John Burr, whom we all know as the heart and memory of the NWRSF, will be the keynote speaker in this 25th year of the organization’s existence. Finally, on Sunday, August 8, Sue Best will counsel us on mental health—“Don’t Worry; Be Happy”—and a panel of parents and professionals will respond to burning questions and parent issues. Some adjustments to this schedule may occur, of course; check our website as the conference approaches for a revised and more complete list of events and speakers. But there will be something for everyone! We guarantee it! RESERVE ROOMS FOR CONFERENCE BY JULY 5 We were well treated and had a very successful conference at Eagle Crest in 2004, so we’re looking forward to going back. Love that Central Oregon sunshine! To reserve rooms, call Eagle Crest at 800-682-4786 or 541-923-2453, or go on-line to www.eagle-crest.com and use group code 43U6YK. King rooms and double queen rooms cost $100 a night (plus a 14% county lodging tax), a one-bedroom suite costs $120, a two-bedroom condo costs $220, a three-bedroom condo goes for $250, and a four-bedroom condo will set you back $300 a night. PHOTOS FOR CONFERENCE VIDEO REQUESTED! John Burr is collecting photographs of Rett girls and their families for a “Tribute to the Girls” video for this summer’s conference. Please identify the subjects and send photos to P.O. Box 5475, Salem, OR 97304 or e-mail versions to rettburr@comcast.net. MEMBERSHIP RENEWAL, CONFERENCE REGISTRATION, AND RESPITE CARE FORMS AVAILABLE ON-LINE We’re hoping to save a little money on printing and postage by encouraging all of you to use our website, www.nwrettsyndrome.net, to print out, then fill in and send back, the forms we use every year. We will, of course, also be happy to mail you paper copies of these forms; simply call (888) 326-2185 and leave your request. Pre-registration for the conference is greatly appreciated, since it helps us plan, but we will also cheerfully accommodate at the registration table those who decide at the last moment to attend. NEWSLETTER DELIVERY OPTIONS Also, if you’d like to receive future NWRSF newsletters solely by e-mail, please let Robyn Skupa know (rskupa@yahoo.com). No need to wait for days for the very latest NWRSF news! ON YOUR MARK, GET SET, GO! A “Run for Rett” fundraiser will take place June 12 in Olympia, Washington. Organizers Adam and Lauren Cramer promise that the 5K course around Capitol Lake in downtown Olympia will be flat and totally beautiful. The race will start at 9 a.m. There will also be a 3K walk for those who prefer to stroll. “I’d love to have as many Rett families there as possible to help raise awareness,” Lauren says. “Even if no one in the family is interested in entering the race, we’ll need lots of volunteers!” For more information, call (360) 754-2046 or check out our website. MURPHYS HOST HOLIDAY PARTY Many thanks to Katharine and Ken Murphy, who hosted an open house for Rett parents in Portland on Dec. 18. There was lots of food, good fellowship, and fun! The NWRSF will be encouraging more social events like this during the year to give people a chance to stay in touch between conferences and enjoy each other’s company. “LIVING AND LEARNING WITH RETT SYNDROME,” 2009 NWRSF CONFERENCE The 24th annual conference was held August 6-9, 2009, in the Salem Conference Center, with local arrangements coordinated by Salem residents Sarah Snyder, Linda Burr, and Cindy LeMire. We stayed at the Phoenix Grand Hotel adjacent to the Conference Center. On Friday, our presenters shared practical information to use in our ordinary lives. Tammy Franks demonstrated the latest generation of car seats, showing how equipment can be adapted for people with Rett syndrome as they grow from infancy to adulthood. Sometimes we split into discussion groups to explore topics like sibling concerns, education for preschoolers, integrative care, and, for new families, what a diagnosis of Rett syndrome means. Rose-Marie Gallagher continued her presentation about literacy from 2008: our Rett kids CAN learn to read! On the second day, our “science” day, we learned from Drs. Patrick MacLeod and Sergio Ojeda about research developments in general and specifically about their research on Rett topics. Both receive some financial support from the NWRSF. We then had a “respiratory hour,” followed by a presentation on sleep disorders by Dr. Manisha Witmans. Finding a dentist to work on our Rett children is a challenge, but Dr. Peter Lax, from Portland, gave us a blueprint for promoting oral health. Dr. Budden, recently returned from a conference in Milan, Italy, reprised her presentation on emotion and behavior. We closed our conference on Sunday with the popular Dr. Mark Houston demonstrating osteopathic manipulative techniques and giving us a chance to practice on each other. In concurrent sessions, Joey Razzano taught stretching exercises and appropriate techniques to strengthen the lower back, and physical therapist B.J. Petersen led a workshop on body mechanics when handling or lifting. We closed our conference with a panel of siblings of Rett children sharing their experiences and feelings. The program was packed with useful information, and the glimpses we got of the intellectually strenuous work on Rett syndrome being conducted in science laboratories and in clinical settings revealed the excitement and frustrations of scientific inquiry. As always, when the work of the conference was done, we partied! Linda Burr organized “Tropical Night,” with a band and the dance troupe Paradise of Samoa, and at this and other social gatherings, new friendships began while old ones matured. The 2009 conference was a wonderful event. We expect great things from the 2010 conference at Eagle Crest, too! Jack Bennett, Former President LACEY BOWMAN, 1982-2009 Lacey Ann Bowman of Pendleton, Oregon, aged 26, lost her fight with a respiratory virus on April 4, 2009. Her family was by her side. Lacey suffered from a serious aspiration at age 13, but found the will to survive with the loving support of her family. Lacey lived in a nursing facility one block from her parents’ home for the last 13 years of her life. Her mom and dad visited four times every day, putting her to bed every night. She leaves her parents, Dave and Nancy, and brothers Corey (31) and Zach (29), plus aunts, uncles and grandmothers. Lacey’s wonderful light and life have left a lasting and positive impression on the lives of all she touched. When he was 15, Lacey’s brother Corey called her his teacher: “This person showed me so much about my God. My teacher taught me to be to kind to others and not to look at people who are different or who do not look right. My teacher taught me to love my family when I didn’t want to. And she taught me to call to God for help when things go wrong or when times are tough. This person showed me the way to the Lord and showed me how to see the good in all people while many others were still blind. My teacher showed me how to put up with embarrassment. This person taught me 90% of all the social skills I have. This person showed me how to feel what other people are feeling even when they are being mean for no reason. My teacher showed me why these people are feeling that way and how I maybe could help. This person showed me how to give things away without demanding something in return. This person is my handicapped sister Lacey. She showed me all these things without even knowing it.” JEFF KUHNS, 1971-2010 We were very sorry to hear of the death of Jeff Kuhns, a former Board member, on Jan. 2, 2010. Those of us who knew him only through the NWRSF remember what a terrific job he and Lisa did organizing the sale of “Life is Good” T-shirts at the Vancouver conference, and how indefatigably he argued for putting on a “Texas Hold ‘Em” poker tournament as a fundraiser. Those of us who attended his memorial service on January 16 learned that he also had an absolute passion for rivers, matched only by his appreciation of and ability to relate to children, his penchant for practical jokes, his capacity for friendship, and his loyalty to his friends. And what a lot of friends! There was a standing-room only crowd at McMenamins Edgefield in Troutdale. Jeff leaves his wife Lisa and children Colin and Ryan. Memorial donations may be made to “Friends of Colin and Ryan Kuhns Fund” at U.S. Bank. ALMOST AN AESOP’S FABLE Tom Mohr of Hillsboro reports that his daughters Amanda, 17, and Ruth, 4, have discovered the benefits of working together. Amanda, who has Rett syndrome, is unable to open doors. Ruth, an active preschooler, has no trouble with doors but, alas, is too short to reach the pantry shelves. But when they combine their talents and efforts, they have no trouble at all scoring cookies! Moral: Sufficiently determined kids working cooperatively can outwit their parents every time. JOHN’S COLUMN: JUST TEXT ME! As I recover from the holidays, I find myself technically challenged again. Our old cell phones were failing to charge adequately, and therefore we decided to shop for new phones for Christmas gifts. We already had two phones, but Linda and Andrew were the primary users; I had to beg to borrow one. With Andrew off to college next year, the intelligent conclusion was to expand to three phones. The importance of a cell phone to a Rett family is undeniable. At a minimum, it frees up mothers to run errands and hold jobs and still be in contact when the school calls with an emergency—and when I’m shopping and get a call at the grocery store, I can pick up whatever is needed then and there. What I wasn’t expecting was a well-planned and coordinated attack to get “texting.” Call me old-fashioned if you will, but I wasn’t so certain we needed “texting.” We’d been getting along just fine without it. Nevertheless, after a lengthy debate, I agreed to the unlimited texting plan, though I vowed adamantly that I would never use or like it. By 9:00 a.m. on Christmas Day, I had received my first text: “Merry Christmas, Dad…Andrew.” By 12 noon we had received a text from our friend Michelle congratulating us on the texting plan. Two days later while skiing, I received a text at the top of the mountain: “It’s snowing in Salem. How’s the skiing?” Linda attached a picture of the yard covered with snow, another nice feature of the phone and the new plan. With the assistance of my technical support/ski partner Andrew, I struggled to reply: “It’s snowing here. Skiing is great.” So what does all this have to do with Rett syndrome? I am amazed by the advances in modes of communication and reminded how important communication is in our lives—especially the lives of our Rett children. As Rett children struggle to communicate through various means, from vocalizations that sound like “hi” to non-verbal expressions to let us know how they feel or what they want to some form of adaptive communicating device (and we’ve tried methods ranging from picture boards to loop tapes), I admire all their efforts and especially the smiles on their faces when they know they have succeeded. In my mind, they all get an A+ for their efforts. For parents and extended family, staying in touch helps keep us closer (even without a texting plan), and with frequent communication, we’re more apt to be able to judge when someone needs our help. I don’t mean to sound as pessimistic as Andy Rooney on “Sixty Minutes,” but I hope I can muster the strength to master this texting problem I have. John Burr, Former President |
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NWRSF P.O. Box 5475 Salem, OR 97304 (888) 326-2185 |
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