Resources

/Resources

Education

Most children and adolescents whose development is affected by having an X or Y variation are eligible for special education services. A federal law, the Individuals with Disabilities Education Act (IDEA) includes a variety of safeguards and options including Part C which provides for services to children birth to 3 years of age, and Part B which mandates a free public education for children with special needs who qualify from the ages of 3 to 21.

IDEA requires a multidisciplinary evaluation to determine if the child qualifies for special education services. This means that professionals from a variety of fields (medicine, psychology, occupational therapy, etc.) and the parents of the child collaborate to assess the child’s strengths and needs and determine appropriate educational services.

Every child eligible for special education has either an Individualized Family Service Plan (IFSP, for children birth to age 3), or an Individualized Education Program (IEP, for children age 3-21). Both programs specify the details of a child’s educational plan.

Intervention varies and is based upon the child’s individual needs. Areas that may be addressed include: speech and language, cognition, behavior, sensory-motor and academics. Settings range from home-based programs for infants to a variety of school-based classrooms for older children and adolescents.

Resources

This section provides a series of links to other resources that may be useful to some persons dealing with X and/or Y aneuploidy conditions (see definition below). AXYS is aware that there is wide variability in the signs and symptoms associated with these conditions and not everyone will require the same resources. However, we’re hopeful that a number of these resources may be useful to a significant percentage of this population.

• ADHD Symptoms in Children and Adolescents with Sex Chromosome Aneuploidy: XXY, XXX, XYY, and XXYY

• Everything You Never Knew About the ADHD Brain

• Secrets of the ADHD Brain: Why We Think, Act, and Feel the Way We Do

• The Brain-Behavior Connection In Children with ADHD

• IDEA—the Individuals with Disabilities Education Act | Center for Parent Information and Resources

• Understanding Tests and Measurements for the Parent and Advocate

• National Center for Learning Disabilities

• Depression and Bipolar Support Alliance (DBSA)

• Think College – College Options for People with Intellectual Disability

• PACER Center

• Wrightslaw: Special Education Law, 2nd Edition
By Peter W.D. Wright & Pamela Darr Wright

• Special Education Law, 3rd Edition
By Nikki L. Murdick & Barbara C. Gartin, et al.

• Steps to Independence: Teaching Everyday Skills to Children with Special Needs
By Bruce L. Baker & Alan J. Brightman

• 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, Revised and Expanded 2nd Edition
By Ellen Notbohm & Veronica Zysk, et al.

• Autism: Asserting Your Child’s Rights to a Special Education
By David A. Sherman

• Functional Behavior Assessment for People […]

2018-09-01T14:06:01+00:00Categories: Resources|

Clinics

ACRC_Logo
In 2015, the AXYS Board of Directors voted to approve funds to help develop the AXYS Clinic and Research Consortium (ACRC). This exciting development committed us to help organize, fund and build out a clinical consortium that will operate as independent clinics committed to collaborating with one another, sharing informational resources, and exploring opportunities to participate in joint research projects. In addition, AXYS organizes annual meetings of the consortium at which members meet to discuss topics important to the SCA community.

The goal of AXYS is to ensure that all families impacted by any of the chromosome variations have access to the best available evaluation, treatment or treatment recommendations. The AXYS Clinic & Research Consortium is an important means of achieving that goal.

For help in determining which clinic might be most appropriate for you or your family, please read the following and/or call us at 1-888-999-9428.

Types of Clinics

Due to the many X and Y Chromosome variations, not all clinics specialize in all conditions. Below is a listing of ACRC clinics. The specific conditions and patient ages served by the clinic are noted in the description.

Multidisciplinary Clinics

Some clinics are multidisciplinary in their services. A multidisciplinary clinic provides a comprehensive, integrated approach to caring for individuals. Patient visits are organized to provide access to all necessary medical, psychological, and therapy disciplines in one visit. Professionals then meet, discuss each case, then collaborate to develop a fully coordinated care plan tailored to the patient. Some clinics also provide “take-home” materials for local medical, therapy and school professionals. Please review each clinic’s website and/or description of its services for information regarding its specific approach to seeing patients. If unsure about the types of services provided, be sure to ask at the time an appointment is scheduled.

California

Los Angeles
Cedars Sinai Hospital: eXemplarY Kids Clinic
X and Y variations seen: All
Ages seen: Birth to age 21
Medical Director: Co-Directors: Yana J. Tavyev MD and B. Michelle Schweiger, DO, MPH
Appointments/Clinic Coordinator: TBA (please email B. Michelle Schweiger with any questions)
310 423-7779 (appointments) / 310-423-9935 (clinic coordinator) / 310 423-7940 (office)
Hospital website

Stanford
Stanford University School of Medicine
X and Y variations seen: All
Ages seen: Children and Young Adults
Medical Director: David Hong, MD
Appointments: Clinic Coordinator – Reiko Riley, reikor@stanford.edu
Hospital website

Colorado

Denver
Children’s Hospital Colorado: eXtraordinarY Kids Clinic
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Nicole Tartaglia, MD
Clinic Coordinator: Susan Howell, MS, MBA, CGC
Appointments: 720-777-8361 or extraordinarykidsclinic@childrenscolorado.org
Clinic website

Delaware

Wilmington
Nemours Alfred I. duPont Hospital for Children: eXtraordinarY Kids Clinic
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Judith Ross, MD
Appointments/Clinic Coordinator: Karen Kowal, 215-955-9008, kkowal@nemours.org
Clinic website   Clinic brochure

Georgia

Atlanta
Emory University: The eXtraordinarY Clinic at Emory University
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: […]

2018-12-18T11:27:09+00:00Categories: Resources|

Research and Clinical Trials

research3

Toward Better Diagnosis and Treatments

Research is the lifeblood of all medical conditions that stand to be improved as we learn more about them. No serious advance can be made against diseases without carefully constructed scientific research. Research helps raise awareness, inspire hope, and lead to early diagnosis and effective treatments.

Many studies on X and Y variations take place simultaneously at research centers around the world. If you want to know more about individual studies, scroll down the page and click on the website or email links directing you, or simply follow the instructions listed for each study.

If you are new to these conditions and the nature of clinical trials, click here for more information.

Post New Trials

If you are the Principal Investigator or other responsible person for a study that you believe may be applicable to one or more of the X and Y variations that AXYS serves, we would be happy to post information concerning your research on our website.

Click here for more information.

Specific Research Announcements

For a regularly updated list of specific research recruiting announcements that are open and actively recruiting families, please click here.

2016-12-21T01:27:40+00:00Categories: Resources|

Prior Conferences

Every two years, AXYS sponsors a conference that brings together those with an extra X or Y chromosome variation, their parents or other family members, researchers, medical professionals and others. The conference features individual presentations, panel discussions, and plentiful opportunity for informal discussion and support on a wide range of matters relevant to our members and friends. Much of the material is of a timeless nature that can be highly informative and helpful to those new to the field.


2017 AXYS Family Conference, Aurora, Colorado

2015 AXYS Family Conference, Baltimore, Maryland


Powerpoint Presentations From the 2013 Conference

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PRESENTER

SESSION TOPIC
Sharron Close, PhDFamily Management Style and Diagnosis Disclosure in Klinefelter Syndrome: Preliminary Findings
Sharron Close, PhDColumbia University & Yale University – Research Update (Panel)
Sharron Close, PhDWhen Others Don’t Get It
Jackie Frazier, MA, SLP-CCCSpeech-Language Intervention: Goals and Expectations, Early intervention through High School
Sydney Martin, MS OTROccupational Therapy Treatment Across the age span
Phyllis Quatman; Gary GlissmanLegal and Law Enforcement Issues
Rebecca Wilson, PsyD, Erin Gorman Bozorgpour, PhD, Jamie Blume, PsyDBehavioral Considerations for XY Chromosome Differences
Christa Hutaff-Lee, PhDSupporting the Development of Planning and Org Skills
R. Maria R. Ochoa, LCSWStrategic Planning & Resources for Crisis Prevention and Intervention
Pravin Rao, MD XXY and Fertility – and introduction to Johns Hopkins Klinefelter Syndrome Center
Ram Raj Singh, MDX/Y chromosome variations & Immune System Health
Ram Raj Singh, MDUCLA Research Update (Panel)
Phillip S Zeitler, M.D. PhDA Brief overview of endocrine issues in Klinefelter syndrome
Phillip S Zeitler, M.D. PhDEndocrine Issues Related to X and Y Chromosome Variations
Jeannie Visootsak, MD, FAAPStreams of Development and Behavior in XXY
Jeannie Visootsak, MD, FAAPHealth and Development in XYY Syndrome
2017-07-26T21:24:04+00:00Categories: Resources|