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

Thanksgiving and Mealtime Precautions

mealtime_thanksgiving_logo

Thanksgiving is the day set aside in the United States and Canada as a day of pausing to reflect all that we are thankful for by connecting with friends and family over good food. It is also the day of taking special precautions when serving people with developmental disabilities.

Aspiration is a huge risk during the holiday season. Factors that place people at risk for aspiration includes the following:

  • Being fed by someone else
  • Poor chewing or swallowing skills
  • Weak or absent coughing/gagging reflexes which is common in people with cerebral palsy or muscular dystrophy
  • Eating to quickly
  • Inappropriate fluid consistency
  • Inappropriate food texture

For children and adults with autism, Thanksgiving may be a challenge for a variety of reasons:

  • Sensory and emotional overload with large groups
  • Picky eaters
  • Difficulty with various textures of food

To help you mange Thanksgiving with ease, click on the articles below:

5 simple steps to hosting an autism-friendly Thanksgiving

8 tips for managing Thanksgiving with children with autism

10 genius ways to help your autistic picky eater to eat this Thanksgiving

Autism and Picky Eating

Autism and Thanksgiving: How to cope with the feasting and hubbub

Feeding kids with sensory processing disorders

Preparing for Thanksgiving on the autism spectrum

Swallowing problems? What to do about Thanksgiving

Thanksgiving dinner ideas for speech therapy activities

Tips for Navigating Thanksgiving on the Spectrum

 

Updated 08/26/2020

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

Intellectual Disability Resource Page

Definition:

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

Awareness Day: None

Awareness Month: March

Ribbon: Blue/Silver

Prevalence:

  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

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