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Supporting children with Epidermolysis Bullosa to transition into secure and independent lifestyles

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Epidermolysis Bullosa

  • Epidermolysis Bullosa (EB) is a rare genetic disorder that causes the skin to become extremely fragile and blister easily. The condition is often referred to as "Butterfly Skin" due to the delicate nature of the skin, which is as fragile as a butterfly's wings.

    Key Characteristics:

    Genetic Basis: EB is caused by mutations in genes responsible for producing proteins that help the layers of skin adhere to each other.

    Fragile Skin: Individuals with EB have skin that can blister and tear from minor friction or trauma.

  • Clinical Evaluation: A dermatologist or specialist examines the skin and assesses symptoms.

    Genetic Testing: Identifies specific mutations in the genes responsible for EB.

    Skin Biopsy: Examines a small sample of skin under a microscope to determine the specific type of EB.

  • Epidermolysis Bullosa Simplex (EBS): Blisters primarily occur on the hands and feet and tend to heal without significant scarring.

    Junctional Epidermolysis Bullosa (JEB): Blisters can occur at birth, often affecting large areas of the body and mucous membranes.

    Dystrophic Epidermolysis Bullosa (DEB): Blisters can lead to significant scarring and may affect the skin as well as other organs.

    Kindler Syndrome: Characterized by blistering, skin atrophy, and photosensitivity.

  • There is currently no cure for EB, but treatment focuses on managing symptoms and preventing complications:

    Wound Care: Gentle wound care routines to prevent infections and promote healing.

    Pain Management: Medications and therapies to manage pain.

    Nutritional Support: Special diets and nutritional supplements to address dietary challenges and promote growth.

    Protective Measures: Use of soft clothing, padding, and other measures to reduce skin trauma.

    Regular Monitoring: Ongoing care by a multidisciplinary team to address the various aspects of the condition.

  • Bryan suffers from Epidermolysis Bullosa, a rare and excruciating skin condition often referred to as "Butterfly Skin Syndrome." His delicate skin was as fragile as the wings of a butterfly, prone to painful blisters and tears at the slightest touch.

    When I entered his room, I saw Bryan lying on his bed, his body wrapped in bandages to protect his sensitive skin.

    As we chatted, I learned that even the simplest of tasks were monumental challenges for Bryan. Drinking milk, something most toddlers did with ease, was impossible for him. The blisters in his mouth and throat made swallowing an excruciating ordeal. Instead, he relied on a special nutritional formula delivered through a feeding tube to ensure he received the nutrients he needed to grow.

    Bryan's story inspired us to help more children.

  • The debra Impact Network provides the opportunity for people directly affected by EB to take action to better the lives of all those suffering from Epidermolysis Bullosa.  

    Through education, advocacy, and outreach, Network Members join debra of America in their mission to accelerate research and create real improvements for all those living with this disease.

Service Dogs & Handlers

  • Service dogs are trained to perform tasks that directly mitigate their handler's disability. These tasks can range from guiding visually impaired individuals to alerting handlers of impending medical issues.

    Service dogs tasks must be directly related to the person's disability.

  • Service dogs can assist with physical, sensory, psychiatric, intellectual, or other mental disabilities. They are versatile and adaptable to many different needs.

    1. Guide Dogs: Assist individuals who are visually impaired by navigating around obstacles, stopping at curbs and steps, and guiding their handlers safely through various environments.

    2. Hearing Dogs: Alert individuals who are deaf or hard of hearing to important sounds such as alarms, doorbells, and ringing telephones.

    3. Mobility Assistance Dogs: Help individuals with physical disabilities by retrieving items, opening doors, and providing support and balance.

    4. Medical Alert Dogs: Detect and alert handlers to medical conditions such as seizures, low blood sugar, or severe allergies.

    5. Psychiatric Service Dogs: Aid individuals with mental health conditions like PTSD, anxiety, or depression by performing tasks that help manage symptoms.

  • Increased Independence: Service dogs enable individuals with disabilities to perform tasks and activities that they might otherwise find difficult or impossible.

    Enhanced Safety: These dogs can prevent accidents, alert to medical emergencies, and provide a sense of security.

Disability Rights and Resources

  • The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications. It also applies to the United States Congress.

    To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.

  • Legal Protections: Under laws such as the Americans with Disabilities Act (ADA) in the United States, service dogs are allowed access to public places, including restaurants, stores, and public transportation, where pets are typically not allowed.

    The Americans with Disabilities Act (ADA) and Service Dogs

    The Americans with Disabilities Act (ADA) is a federal law that ensures the rights of individuals with disabilities, including those who use service dogs. Under the ADA:

    - Public Access Rights: Service dogs are allowed to accompany their handlers in all public places, including restaurants, stores, hotels, and public transportation. This access ensures that individuals with disabilities can participate fully in public life.

    - No Discrimination: Businesses and organizations cannot deny access or service to individuals with service dogs. They must allow service dogs to accompany their handlers and cannot impose additional fees or restrictions.

    - Limited Questions: When it is not obvious what service the dog provides, staff may only ask two questions:

    1. Is the dog a service animal required because of a disability?

    2. What work or task has the dog been trained to perform?

    - Behavior Standards: Service dogs must be under control and well-behaved. If a service dog is out of control and the handler does not take effective action to control it, or if the dog is not housebroken, a business can request that the dog be removed.

    The ADA ensures that individuals with disabilities who rely on service dogs have equal access to public spaces and are protected from discrimination.

  • Individuals with disabilities oftentimes lack equal access to comprehensive, quality healthcare services tailored to their specific needs. Through our platform we research what are the best resources for individuals with EB and service dogs.

  • Title I requires employers with 15 or more employees to provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others. For example, it prohibits discrimination in recruitment, hiring, promotions, training, pay, social activities, and other privileges of employment. It restricts questions that can be asked about an applicant’s disability before a job offer is made, and it requires that employers make reasonable accommodation to the known physical or mental limitations of otherwise qualified individuals with disabilities, unless it results in undue hardship. Religious entities with 15 or more employees are covered under title I.

    Title I complaints must be filed with the U. S. Equal Employment Opportunity Commission (EEOC) within 180 days of the date of discrimination, or 300 days if the charge is filed with a designated State or local fair employment practice agency. Individuals may file a lawsuit in Federal court only after they receive a “right-to-sue” letter from the EEOC.

    Charges of employment discrimination on the basis of disability may be filed at any U.S. Equal Employment Opportunity Commission field office.

  • Title II covers all activities of State and local governments regardless of the government entity’s size or receipt of Federal funding. Title II requires that State and local governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities (e.g. public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings).

    State and local governments are required to follow specific architectural standards in the new construction and alteration of their buildings. They also must relocate programs or otherwise provide access in inaccessible older buildings, and communicate effectively with people who have hearing, vision, or speech disabilities. Public entities are not required to take actions that would result in undue financial and administrative burdens. They are required to make reasonable modifications to policies, practices, and procedures where necessary to avoid discrimination, unless they can demonstrate that doing so would fundamentally alter the nature of the service, program, or activity being provided.

    Public Transportation:

    The transportation provisions of title II cover public transportation services, such as city buses and public rail transit (e.g. subways, commuter rails, Amtrak). Public transportation authorities may not discriminate against people with disabilities in the provision of their services. They must comply with requirements for accessibility in newly purchased vehicles, make good faith efforts to purchase or lease accessible used buses, remanufacture buses in an accessible manner, and, unless it would result in an undue burden, provide paratransit where they operate fixed-route bus or rail systems. Paratransit is a service where individuals who are unable to use the regular transit system independently (because of a physical or mental impairment) are picked up and dropped off at their destinations.

  • Title III covers businesses and nonprofit service providers that are public accommodations, privately operated entities offering certain types of courses and examinations, privately operated transportation, and commercial facilities. Public accommodations are private entities who own, lease, lease to, or operate facilities such as restaurants, retail stores, hotels, movie theaters, private schools, convention centers, doctors’ offices, homeless shelters, transportation depots, zoos, funeral homes, day care centers, and recreation facilities including sports stadiums and fitness clubs. Transportation services provided by private entities are also covered by title III.

    Public accommodations must comply with basic nondiscrimination requirements that prohibit exclusion, segregation, and unequal treatment. They also must comply with specific requirements related to architectural standards for new and altered buildings; reasonable modifications to policies, practices, and procedures; effective communication with people with hearing, vision, or speech disabilities; and other access requirements. Additionally, public accommodations must remove barriers in existing buildings where it is easy to do so without much difficulty or expense, given the public accommodation’s resources.

    Courses and examinations related to professional, educational, or trade-related applications, licensing, certifications, or credentialing must be provided in a place and manner accessible to people with disabilities, or alternative accessible arrangements must be offered.

    Commercial facilities, such as factories and warehouses, must comply with the ADA’s architectural standards for new construction and alterations.

  • Title IV addresses telephone and television access for people with hearing and speech disabilities. It requires common carriers (telephone companies) to establish interstate and intrastate telecommunications relay services (TRS) 24 hours a day, 7 days a week. TRS enables callers with hearing and speech disabilities who use TTYs (also known as TDDs), and callers who use voice telephones to communicate with each other through a third party communications assistant. The Federal Communications Commission (FCC) has set minimum standards for TRS services.

  • The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.

    IDEA requires public school systems to develop appropriate Individualized Education Programs (IEP’s) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student.

    IDEA also mandates that particular procedures be followed in the development of the IEP. Each student’s IEP must be developed by a team of knowledgeable persons and must be at least reviewed annually. The team includes the child’s teacher; the parents, subject to certain limited exceptions; the child, if determined appropriate; an agency representative who is qualified to provide or supervise the provision of special education; and other individuals at the parents’ or agency’s discretion.

    If parents disagree with the proposed IEP, they can request a due process hearing and a review from the State educational agency if applicable in that state. They also can appeal the State agency’s decision to State or Federal court.

  • Over 20 years active duty experience in U.S. Military serving in and/or with all 5 branches from Vietnam through Desert Storm. Experience in upper level management, military radar intercepts & electronic warfare, airborne radar operations, airport construction & management, anti-terrorist security, high value asset protection, and scientific marine subsurface excavation & recovery.

Meet ATHENA

Training since 2021

Working since 2022