4 Ways to Utilize Rare Disease Foundation Websites as Educators

According to the National Institutes of Health, in the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Definition of rare disease vary from country to county. In Europe affect 1in 2,000 people and in Canada, more than 3.5 million or 10percent of the population are diagnosed with a rare disease.

Although rare, special education teachers and habilitation specialist are more than likely to have a student or an individual diagnosed with a rare disease disorder. In most cases the person is also likely to have an intellectual developmental disorder, which qualified the student to have an iep or an adult attending a day program to qualify for a Medicaid Waiver.

The foundation website’s provide information that can help you understand the rare disease and the impact it has on the student. Further information provides current research on the disorder as well.

The websites can help you in the following ways:

  1. Provides detailed diagnosis information including clinical features, characteristics, and frequently asked questions.
  2. Facebook groups are available where you can join a group to ask questions and share stories.
  3. Printed material included factsheets, booklets, newsletters and ebooks.
  4. Educational information includes webinars, video’s conferences and seminars.

 

The following are links to rare disease website:

Aicardi Syndrome Foundation– Incorporated in 1991, the foundation is dedicated to provided assistance to those affected and their families.

Angleman Syndrome Foundation- Commitment to research to discover Angelman Syndrome treatment and a cure and supporting families.

CDKL5 Deficiency Disorder(International Foundation for CDKL5 Research)- Committed to funding research, both scientific and clinical, raising awareness. Also provides support to newly diagnosed through adulthood..

Cerebral Palsy Foundation– Collaborates with researchers to better understand the disorder. The website offers information through factsheets and a video library.

Chromosome 22 Ring- (Chromosome 22 Central)- Includes information and support for all Chromosome 22 disorders including research, support and events.

Chromosome 22q11.2 Deletion- (The International 22q11.2 Foundation) Provides resources and connections to experts regarding medical, psychosocial and educational needs. The foundation also organizes awareness events, educational conferences and supports legislative advocacy.

Cornelia de Lange Syndrome Foundation– Provides a host of services including information to families, professionals, and researchers.

Dravet Syndrome– A non-profit organization dedicated to raising funds for Dravet Syndrome. Also provides educational videos and webinars on website.

Duchenne Muscular Dystrophy-(Cure Duchenne)– The mission is to improve the lives of everyone affected by Duchenne through accelerating researchers to find the cure, improve care and empowering the Duchenne community.

Fragile X Syndrome Foundation- Serves all those living with Fragile X syndrome with a focus on community, awareness, and research in the pursuit of treatment and a cure. The website includes information on Fragile X and the relationship with Autism. The website also provides a free e-book on adults with Fragile X Syndrome.

Hydrocephalus Association- Provides resources to families, communities, professionals and researchers. Sponsors a yearly educational days and advocacy.

Kabuki Syndrome- The mission is to drive research efforts that show promise to treat, prevent or cure Kabuki syndrome through fundraising, knowledge-sharing and collaboration with researchers

Lowe Syndrome Association– The mission is to improve the lives of persons with Lowe syndrome and their families through fostering communication, providing education and supporting research.

Prader Willi Syndrome Association– The mission is to enhance the quality of life and empower of those affected by Prader-Willi Syndrome. The website includes educational resources such as webinars and a resource library.

Rett Syndrome Organization– The mission is to empower families with information, knowledge and advocacy and to raise awareness.

Sickle Cell Disease Association of America– The mission is to advocate for people affected by sickle cell conditions and empower community-based organization to maximize quality of life and raise public consciousness while searching for a cure.

Trisomy 18 Foundation- Provides information and educational resources to families, medical professionals and the general public.

Turner Syndrome Foundation- Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care.

Williams Syndrome Association– Founded by families of individuals with Williams syndrome to provide resources to doctors, researchers, and educators

2021 Special Needs Conferences and Seminars for Professionals

What a difference a year makes! While most conferences and seminars were held last year in person, COVID-19 has changed the learning process for professionals seeking to improve their professional development. Almost all of the events listed below are being held via digital or virtual including international meetings and conferences.

Below are conferences that vary from practical information to research. Click on the information which is highlighted and it will take to you directly to the website.

February

Autism Awareness Centre, Inc.

The Brain and Autism: Linking Neurology and Interventions to Address Academic and Behavior Challenges
Date: February 11, 2021- 10 am – 11 am
Location: Virtual

International Conference on Special Education and Individual Needs
Date: February 15-16, 2021
Locational: Virtual/Digital

Special Needs Planning Symposium
Date: February 18-20,2021
Location: Virtual

Learning Disabilities Association of America
LDA 58th Annual International Conference
Date: February 18-21, 2021
Locational: Virtual

National Autistic Society
Understanding Stress and Anxiety in Autism
Date: February 23, 2021
Location: Virtual

Future Horizons
Webinar with Dr. Temple Gradin
Date: February 24, 2021
Location: Virtual

20th Annual Alabama Autism Conference
Date: February 26, 2021
Location: Virtual

Special Education Conference
Date: February 25-26, 2021
Location: Virtual

Association for Behavior Analysis International
15th Annual Autism Conference
Synergy of Science and Practice Worldwide
Date: February 28-March 2, 2021
Location: Virtual

March

International Conference on Special Needs, Education, Models, Standards and Practices
Date: March 4-5, 2021
Location: Virtual

Neurodiversity Conference (City University of New York)
Date: March 4-5, 2021
Location: Virtual

3rd European Autism Congress
Date: March 17-18, 2021
Location: Webinar

Council for Exceptional Children
Date: March 8-13, 2021
Location: Virtual Event

April

Autism Societies of Greater Wisconsin and Minnesota Autism Conference
Date: April 21-24, 2021
Location: Virtual

2021 Special Education- Home Edition
California Teachers Association
Date: April 30- May 2, 2021
Location: Virtual

May

8th World Congress on ADHD

From Child to Adult Disorder
May 6-9, 2021
Location: Virtual

International Conference on Special Educational Needs, Teaching and Different Approaches
Date: May 24-25, 2021
Locational: Virtual

June

Milestones National Autism Conference
Date: June 16-17, 2021
Location: Virtual

Special Education Law Symposium
Date: June 20-25, 2021
Location: Virtual

American Association on Intellectual and Developmental Disabilities (AAIDD)
Date: June 21-24, 2021
Location: Virtual

International Conference on Autism in Pediatrics
Date: June 24-25, 2021
Location: Virtual

July

National Down Syndrome Congress
Annual Convention
Date: July 8-11, 2021
Location: Phoenix, AZ

International Conference on Special Education
Date: July 29-30, 2021
Location: Virtual

August

National Autism Conference
Date August 2-5, 2021
Location: Virtual

International Conference on Special Education and Technology
Date: August 26-27, 2021
Location: Virtual

September

International Conference on Autism, Intellectual and Developmental Disabilities
Date: September 20-21, 2021
Location: Virtual

October

Midwest Symposium for Leadership in Behavior Disorders
Autism Conference
Date: October 7-8, 2021
Location: Virtual

What is Executive Function Disorder?

What is Executive Functioning?

According to CHADD org, Executive function skills refers to brain functions that activate, organize, integrate and manage other functions which enables individuals to account for short- and long term consequences of their actions and to plan for those results.

According to Rebecca Branstetter, author of The Everything Parent’s Guide to Children with Executive Functioning Disorder,¬†These skills are controlled by the area of the brain called the frontal lobe and include the following:

  • Task Initiation- stopping what you are doing and starting a new task
  • Response Inhibition- keeping yourself from acting impulsively in order to achieve a goal
  • Focus- directing your attention, keeping you focus, and managing distractions while you are working on a task
  • Time Management- understanding and feeling the passage of time, planning¬† good use of your time, and avoiding procrastination behavior.
  • Working Memory- holding information in your mind long enough to do something with it (remember it, process it, act on it)
  • Flexibility- being able to shift your ideas in changing conditions
  • Self-Regulations- be able to reflect on your actions and behaviors and make needed changes to reach a goal
  • Emotional Self-Control- managing your emotions and reflecting on your feelings in order to keep yourself from engaging in impulsive behaviors.
  • Task Completion- sustaining your levels of attention and energy to see a task to the end.
  • Organization- keeping track and taking care of your belongings (personal, school work) and maintaining order in your personal space.
What Causes Executive Functioning Disorder?
  • a diagnosis of attention deficit hyperactivity disorder (ADHD)
  • a diagnosis of obsessive-compulsive disorder (OCD)
  • a diagnosis of autism spectrum disorder
  • depression
  • anxiety
  • Tourette syndrome
  • Traumatic
Signs and Symptoms
  • Short-term memory such ask being asked to complete a task and forgetting almost immediately.
  • Impulsive
  • Difficulty processing new information
  • Difficulty solving problems
  • Difficulty in listening or paying attention
  • issues in starting, organizing, planning or completing task
  • Difficulty in multi-tasking

Issues with executive functioning often leads to a low self-esteem, moodiness, insecurities, avoiding difficult task. and low motivation

Managing Executive Functions Issues
  • Create visual aids
  • use apps for time management and productivity
  • Request written instructions
  • Create schedule and review at least twice a day
  • Create checklist

 

Teaching Strategies for Individuals with Multiple Disabilities

 

Evidence based practices for students with severe disabilities 

Instructional strategies for students with multiple disabilities

Multiple disabilities in your classroom: 10 tips for teachers

Severe and education of individuals with multiple disabilities

Strategies for inclusion of children with multiple disabilities including deaf-blindness

Students who are blind or visually impaired with multiple disabilities

Students with multiple disabilities

Supporting young children with multiple disabilities: What do we know and what do we still need to learn?

Teaching students with multiple disabilities

Teaching students with severe or multiple disabilities

What is a Visual Impairment?

According to the Centers for Disease Control and Prevention (CDC), approximately 6.8% of children younger than 18 years in the United States have a diagnosed eye and vision condition and 3% of children younger than 18 years are blind and visually impaired. Visual disability is one of the most prevalent disabilities disabilities among children.

According to IDEA’s definition, visual impairment is defined s including blindness means an impairment in vision that even with correction, adversely affects a child’s educational performance. The World Health Organization (WHO), classifies visual impairment as occurring when an eye condition affects the visual system and one or more of its vision includes both partial sight and blindness

Classifications

The World Health Organization uses the following classification based on visual acuity in the better eye:

  • 20/30 to 20/60- mild vision impairment
  • 20/70 to 20/160- moderate visual impairment
  • 20/200 to 20/400- severe visual impairment
  • 20/500 to 20/1,000- profound visual impairment
  • More than 20/1,000- considered near-total visual impairment
  • No light perception- considered total visual impairment or total blindness
Types of Visual Impairment
  • Strabismus– a condition when the eyes do not align with each other (crossed eyes)
  • Congenital cataracts– a clouding of the eyes natural lens present a birth.
  • Retinopathy of prematurity– a blinding disorder that affects prenatal infants that are born before 31 week of gestation.
  • Coloboma- a condition where normal tissue in or around the eye is missing at birth.
  • Cortical visual impairment– a visual impairment that occurs due to brain injury.
Signs of Visual Impairments
  • Appears “clumsy” in new situation
  • Shows signs of fatigue or inattentiveness
  • Does not pay attention when information is on the chalkboard or reading material
  • Is unable to see distant things clearly
  • Squints
  • Eyes may appear crossed
  • Complains of dizziness.
Causes

The causes of childhood blindness or visual impairment is often caused by Vitamin A deficiency which is the leading cause of preventable blindness in children. Other causes include genetics, diabetes, injury and infections such as congenital rubella syndrome and chickenpox before birth.

Cortical Visual Impairment (CVI)

Cortical Visual Impairment in children is attributed to brain dysfunction rather than issues with the eyes. Causes included hypoxia, traumatic brain injury, neonatal hypoglycemia, infections and cardiac arrest.

 

 

References

World Health Organization (WHO)

www.cdc.org