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E Tra, E Tra Volume VII, Issue 1; January 2011 e tra, e tra Volume VII, Issue 1; January 2011 Mark Your Three Cheers for... Calendar Support Meetings Peter Todd, MD, PhD, Donna Martin, MD, PhD and First Saturday Jeffrey Innis, MD, PhD of of the Month the proposed Michigan When: Fragile X Clinic (see page 5). February 5, 2011 March 5, 2011 April 2, 2011 Where: Chris Bappert, age 39, was "Worker of the Year" at his workshop, Peckham Beaumont Hospital Vocational Industries. Chris has a sewing job at Peckham. He received his award Royal Oak Campus at a lovely ceremony in November 2010. Chris, his mother Carol and brother Tom Administration Bldg (age 43, who attends a day program), live in Haslett, Michigan. Private Dining Room A GIANT THANK YOU to Dennis Lee Darrow, State Farm Insurance of Special Events: Clarkston, MI for his donation/work on our International Conference! Mr. Darrow March 1-2, 2011 donated a eXtra large amount of popcorn for the Wii tournament in the Wreck National Fragile X Room and we wanted to (belatedly) thank him. Foundation (NFXF) Advocacy on The Hill (see page 2) Twenty-five issues of e tra, e tra! Fragile X Association of Michigan Contact Information: 313-381-2834 fraxmich @hotlinemail.com FXAM.org A member of the NFXF LINKS Network (Linking Individuals Nationally in Knowledge and Support) e tra, e tra Page 2 From the President’s Desk by Laureen Majeske Dear FXAM Members and Friends, up-to-date information in the rest of 3340 to make fragile X world. If you have a topic sure we have Can you believe we've already had that you would like to see covered your accurate 25 issues of eXtra, eXtra from the within the newsletter, please let Sally information and Fragile X Association of Michigan? or Mary Beth know. Here's looking that you are It shows you how much we've grown forward to the next 6 years! staying in the over the last 6 years and the loop! dedication of the families who Another way we try to stay participate. While many families connected is through our FXAM Our general elections ar e come and go, more and more stay to directory. It's a great way to approaching. If you are interested in help make a difference in our connect with folks in your area or sitting on the Executive Board or the community. Our newsletter is our families with children the same age Board of Directors, please let us know lifeline to those of you who are not as your own, etc. If your by the February meeting so that we can able to make it to meetings or events information has changed over the put your name on the voting due to distance or just busy past 5 years and Mary Beth has not roster. You can email me at lives. Our editors do their best to yet contacted you by email or phone, [email protected]. Wishing you keep you informed of everything that please contact her at a very prosperous and healthy New is going on within FXAM as well as [email protected] or 313-881- Year! On the Research Front - Progress, Progress, Progress! By Sally Nantais University of Michigan researcher, Peter K. Todd, MD, PhD, reported in a journal article published in the Public Library of Science (PLos) Genetics that the expression of the toxic RNA that leads to Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) is modifiable by genetic or pharmacologic means. Read more about this FXTAS research at: www2.med.umich.edu/prmc/media/newsroom/details.cfm?ID=1864 Study Shows Promise for New Drug to Treat Fragile X - The first drug to treat the underlying disorder instead of the symptoms of Fragile X, shows some promise according to a new study published in the January issue of Science Translational Medicine. Researchers from Rush University Medical Center helped design the study and are now participating in the larger follow-up clinical trial. The data from the early trial of 30 fragile X patients, found the drug, called AFQ056, made by Novartis Pharmaceuticals, helped improve symptoms in some patients. Read more about AFQ056 research at: www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1458 Study on Family Adaptation to Fragile X Syndrome - Report 1: Overview of the Study and Shared Experiences from Mothers www.fragilex.org/pdf/Report1FragileX1.pdf Advocacy Day Scholarship FXAM offers a scholarship to help scholarship, please contact Laureen ease your budget if you'd like to Majeske at “The future depends participate in the NFXF Advocacy [email protected] or on what we do in Day in Washington, D.C. This year, 586-978-9079 the event is March 1-2. by Saturday, February 5, stating the present.” If you are interested in attending and your intention to apply for the would like to apply for the scholarship. Mahatma Gandhi e tra, e tra Page 3 Twenty-five issues of e tra, e tra! In January 2005, Mary Beth October 2005 October 2006 Langan and Sally Nantais Three Cheers for the 6th Annual Three Cheers for Golf, the Liberatis produced the very first issue of Golf Outing and their Family and Friends the Fragile X Association of Our Golf Sponsors Three Cheers for Nicholas Weber Michigan (FXAM) quarterly Speech, Language & Our Golf Sponsors newsletter. We’ve covered a lot of Communication Grief can be a gift The Scope of Speech and Fragile X: A Family Affair (member topics in the course of six years. Communication with Fragile X notes from the conference) Many of the newsletters are (sample from our families) Between the Lines - Fragile Handle available online at FXAM.org on Through the Maze - Speechfun with Care the support page. Between the Lines - Words are not Through the Maze - for Hurting MarciaBraden.com January 2005 Three Cheers for: Samantha Herron January 2006 January 2007 Life is Different Now… Not Three Cheers for Tyler Sutherby Three Cheers for the Holiday Party Necessarily Better or Worse Yes, There really is a Best Buddies, and Ms. Candace Shay Through the Maze - The National The Best Buddies Program and National FX Advocacy Day Fragile X Foundation What it can do for you. Emory and Waisman Center Fragile Between the Lines - Children with Through the Maze - Bridges4Kids X Studies Fragile X Syndrome A Parents’ Between the Lines - You Will Dream Between the Lines - Fragile X Guide New Dreams Syndrome: Diagnosis, Treatment NFXF Quarterly Feature, Braden on and Research Behavior, Putting the “I” back April 2006 into the BIP Three Cheers for Grandparents April 2007 My Buddy Kyle Alex and Jacob Louk and Friendship April 2005 The Top Ten Things You Should Circle Three Cheers for Bowling & Know about FXTAS Students with Fragile X syndrome, SibShops Advocacy Day, Giving Fragile X a What Teachers Need to Know. Navigating your way through Voice Individualized Education Plans Between the Lines - What’s July 2007 (IEPs) Happening to Grandpa Nathan Fischer and the Golden Stress Management for Parents Grizzly Band Through the Maze - Wrightslaw July 2006 Research News Between the Lines - From Emotions Three Cheers for our Graduates to Advocacy Three Cheers for Andrew Young October 2007 Our Experience with a Fragile X Three Cheers for Golf July 2005 Clinic Don Bailey, Ph.D. Three Cheers for Our Graduates Clinic information for Akron, Our Golf Sponsors Life 101 Graduate - Meet Jason Chicago, Indianapolis and Zarycki Sacramento Workshop Review - The Out-of- 5 Things to consider doing in honor Sync Child of National Fragile X Awareness Fragile X and Sensory Integration Day on July 22 Through the Maze - Developmental Through the Maze - The Arc e tra FX Michigan Between the Lines - The Out-of- e tra Sync Child has Fun e tra, e tra Page 4 Twenty-five issues of e tra, e tra! Continued from page 3 January 2008 July 2009 July 2010 9 to 4 with Eric Zachary Wagar Three Cheers for our graduates Three Cheers for Fragile X Advocacy Day The Who, What & Where of Fragile Fifth Third Bank Diagnosis Experiences of Women X Clinics (Akron, Chicago, Our Graduates with Premature Ovarian Failure Sacramento) Thank You Conference Chairs Wayne State University Research The William and Enid Rosen Study. October 2009 Research Fund Fragile X Research News Three Cheers for Golf Outings The Making of a Newsletter FXAM 10th Annual If a Picture is Worth 1,000 Words, April 2008 Hansen’s 3rd Annual here’s our Fragile X Fundraising Earning Our Wings Never give up! Thank you Grandpa! Novel Fragile X Advocacy Our Golf Sponsors Silverton Skin Institute 7th Annual Scholarship Opportunity for 2008 PrettyFavors.com Botox Benefit International Conference The Gift of Giving First Giving, With a Cup of Joe, a Pumpkin Patch and Art! July 2008 January 2010 What a Favor, Pretty Favors with Three Cheers for our Graduates Three Cheers for Mike Bobbit & the Joyce Kreger Fragile X hits the newsstands in Holiday Party Through the Maze - Hagerman Lab Time’s article Fragile X: Have you never attended an and FXTAS.org Unraveling Autism's Secrets International Fragile X Between the Lines - Visual Conference? Strategies for Improving October 2008 NFXF Advocacy Day Communication What I did on Summer Vacation Top Ten Reasons to Come to Detroit What Every Parent Should Know The FXAM Store About Supplemental Security Our Golf Sponsors April 2010 Income (SSI) and Your Child Turning 18 Three Cheers for January 2009 Our Michigan Advocates Three Cheers for Sammi & Jake October 2010 Austin Nantais Fragile X Advocacy Day Three Cheers for Advocacy Day 2010 - One Hundred Waisman Center Research Study Mike Stockdale for One Million Research Registries - Are You Laureen Majeske 12th International Fragile X Connected? FXAM 11th Annual Golf Outing Conference Sponsorship What’s the Deal? Do you have your Hansen’s 4th Annual Golf Outing Opportunities Fragile X card deck? The Artist Named Grant Fragile X Studies - Emory Study of Our Golf Sponsors Child Learning April 2009 New Fragile X Registry Welcome to the D On the Research Front - Progress Three Cheers for 4th Annual Fragile X 5K Fun Run & little sisters ….
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