February 24 @ 9:00 AM - 2:00 PM UTC-5
Our children are growing up quickly and it is never too early to plan for major life transitions and life after school. The Fragile X Resource Center of Missouri will host a workshop for families of children with Fragile X syndrome to help them plan for this important transition. Topics included: ABLE Accounts Special Needs Trusts Guardianship Adult Housing Options Job Training Programs Lunch will be provided. This event is FREE, but registration is requested. Contact Sara at firstname.lastname@example.org
February 24 @ 10:30 AM - 1:30 PM UTC-5
You spend all your time caring for your family, come take a morning to focus on yourself! Join us to meet other Fragile X Moms for a well-deserved morning of relaxation and self-care. Exchange stories and advice with other moms, ask our experts your Fragile X questions in a panel discussion, and learn relaxation techniques for yourself and your family through yoga, massage, and phone apps. This event is free and open to all Fragile X Moms and carriers. Please share
February 25 @ 11:00 AM - 1:00 PM EST
Get to know some friendly horses and FX families at our Gallop Party! Riders with FX must have a note signed by their physician. Email email@example.com for the form. Sibling riders welcome. Those who don’t like riding will be able to just watch and potentially brush a horse. Pizza will be served. Please let us know of any dietary restrictions. Event is FREE.
March 3 @ 10:00 AM - 12:00 PM UTC-7
Join Children’s Colorado Fragile X Clinic and Colorado Fragile X for the next parent support group. Dr. Nicole Tartaglia will be discussing medication and upcoming drug trials for Fragile X. Free childcare is available at the Creative Play Center adjacent to the cafeteria. RSVP Include number of adults and childcare if needed. firstname.lastname@example.org 720-841-5489
March 5 - March 6
March 5-6, 2018 On National Fragile X Foundation Advocacy Day, held every March, members of the Fragile X community descend on Capitol Hill to relate their stories about Fragile X-associated Disorders, their families, and policies that support Fragile X families, such as health insurance, research at the NIH and DOD, research and public health programs at CDC, ABLE accounts for savings, facilitating the use of potential new drugs for treatments and a cure, and other items. This is your chance
March 10 @ 8:30 AM - 3:30 PM UTC-5
A Multidisciplinary Perspective On Intervention For Neurodevelopmental Disorders Presented By: Tracy Muran Stackhouse, MA, OTR Sarah Scharfenaker, MA, CCC-SLP Training Description Target Audience: OTs, PTs, SLPs, psychologists, educators, social workers, and family members This workshop will provide participants best practices from the fields of speech and language and occupational therapy to develop multidisciplinary interventions for students with neurodevelopmental disorders. Training Objectives Participants will be able to: Define the primary phenotypic characteristics of individuals with Fragile X syndrome (FXS) as an
March 14 @ 6:30 PM - 9:00 PM UTC-5
Moms can share a meal, share ideas and experiences. Siblings will eat at another table; please make sure your teen is comfortable with that. Siblings must be age 16 and older. They will have a discussion lead by Kelley Devine co-leader of Sibling and Self-advocate group. Everyone will pay for their own food and drinks. Please RSVP for reservations Tammy Selinger 860-202-5956 Denise Devine 413-695-0385 (to carpool from Massachusetts) Kelley Devine 413-336-3050
March 24 @ 7:00 PM - 10:00 PM UTC-5
Please join us for the 3rd Annual Fragile X Brew Fest! Dry County Brewing Company Kennesaw, Georgia Ticket Price Includes: ‘Cue BBQ Craft Beer Tastings Live Entertainment Games Silent & Live Auction Early Bird Ticket Price – $75 per person All proceeds benefit the National Fragile X Foundation Greater Atlanta Chapter: Supporting local families living with Fragile X
March 25 @ 9:30 AM - 11:30 AM UTC-5
Join us for a sensory-friendly morning of roller skating! What to expect at a sensory-friendly skate? The music will be turned down to a lower volume No strobe lights No bright lights The cost is only $10 per person and includes your skate rental and one fountain drink! We look forward to seeing you there!
April 7 @ 9:30 AM - 3:00 PM UTC-5
This educational conference features: Jennifer Epstein, PsyD, presenting on behavior management strategies and Craig Erickson, MD presenting existing and exploratory medication. Lisa Prock, MD from the Fragile X Program at Boston Children’s counseling families on liaising with school systems and Sharyn Lincoln MS CGC will lead session for newly diagnosed families. Carol Wilkinson MD PhD exploring possible biomarkers for Fragile X Syndrome. Denise Devine leader of National Fragile X Foundation Western Mass Chapter and Kelley Devine co-leader of the Siblings
April 7 @ 6:00 PM - 9:30 PM UTC-6
Join Us at the Heatherwood Hills Country Club for our “All In for Fragile X” Casino Night Fundraiser! This fundraiser will benefit the National Fragile X Foundation and the NFXF Central Alabama Chapter.
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