Strategies for Caregivers of Children With Fragile X Syndrome (original) (raw)
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- Fragile X 101
* Fragile X 101
* Prevalence
* Signs and Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Newly Diagnosed
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info SeriesFact sheets by topic
- Fragile X MasterClass™️
- Knowledge CenterFrequently asked questions.
- Fragile X 101
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- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* COVID-19
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- ResearchLearn and participate
* Research 101What is research?
* STX209 Reconsent ProjectEnrollment is open
* International Fragile X Premutation Registry — For ParticipantsEnroll now
* Participate in ResearchMyFXResearch Portal
* Original Research Articles
* FORWARD-MARCHDatabase and registry
* Research ResultsNew and archives - Find a Fragile X Clinic
* U.S. Fragile X Syndrome Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - Find a Contact Near You
- Knowledge CenterOur Fragile X library
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
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- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness ProgramResearch facilitation for researchers
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCHRegistry & Database
- NFXF-Led PFDD Meeting for Fragile X SyndromePatient-focused drug development
- Marketing Your Research Opportunities
- Treatment Recommendations
- Fragile X Clinics
* U.S. FXS Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - NFXF RESEARCH AWARDS
* Randi J. Hagerman Summer Scholar Research Awards
* Junior Investigator Awards
Get
Involved-
- Fragile X 101
* Fragile X 101
* Prevalence
* Signs & Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info Series
- FRAGILE X MASTERCLASS
- Knowledge Center
- Fragile X 101
-
- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Fragile X and Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- Research
* Research 101: What is Research?
* STX209 Reconsent Project
* International Fragile X Premutation Registry — For Participants
* Participate in Research
* Original Research Articles
* FORWARD-MARCH
* Research Results Roundup - Find a Clinic Near You
- Find a Contact Near Your
- Knowledge Center
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
-
- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness Program
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCH Registry & Database
- NFXF-Led Patient-Focused Drug Development Meeting
- Marketing Your Research Opportunities
- Treatment Recommendations
- Find a Clinic Near You
- NFXF Research Awards
* Randi J. Hagerman Summer Scholars
* Junior Investigator Awards
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
With Barbara Haas-Givler
Barbara Haas-Givler, BCBA, is the clinic director at the Geisinger Fragile X Center in Pennsylvania. She took the time to share some thoughts, tips, and methods for caregivers on supporting your child with Fragile X syndrome during special times, like the COVID-19 response. Starting with taking care of yourself first (like when the flight attendant tells you to put on your oxygen mask before helping others) to day-to-day strategies like schedules, social stories, activities, and more. Take 17 minutes to listen — it is worth your time.
Here are some additional resources:
After watching the video, please let us know if you have any questions by filling out the form below. Jayne Dixon Weber will try to answer as many as she can and/or it may forward them to Barb.
MORE COVID-19 RESOURCES
Jayne Dixon Weber2021-09-30T11:23:43-04:00
Let the Awareness Continue!
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.