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SCN8A Financial Support Resource Center
Explore an extensive collection of external resources and programs to support SCN8A families. From financial planning tools to grants for medical and adaptive equipment, these third-party organizations offer assistance to help ease financial challenges. Please note, our organization does not directly provide funding; all resources listed are managed by external partners.
Below, is a recent webinar from DEE-P Connections – a partner organization that brings resources, research and results to families impacted by severe epilepsy disorders with Advocacy Abby sharing many resources to help families identify and apply for grants to cover medical expenses. You can check out her database of resources here.
Navigating SSI and SSDI
Supplemental Security Income (SSI) provides monthly cash benefits to people who are disabled, blind, or over 65 with limited income and resources. This program is designed to help cover basic needs like food, clothing, and shelter, offering essential support to those who qualify.
What’s the Difference Between SSI and SSDI?
It’s easy to confuse SSI with Social Security Disability Insurance (SSDI), but they serve different groups:
- SSI is for individuals with limited income and resources, regardless of their work history. It helps those who are elderly, blind, or living with a disability to cover essential expenses.
- SSDI supports those who have worked and paid into Social Security but can no longer work due to a medical condition.
Key Points to Understand About SSI:
Eligibility Requirements:
- To qualify for SSI, countable resources must be below $2,000 for individuals. Resources include things like cash, bank accounts, property, and personal assets.
- Some resources, like a primary home or car, might not count against this limit. If you’re unsure about eligibility, it’s worth exploring how a Special Needs Trust can help safeguard assets without affecting SSI benefits.
Understanding Income Limits:
- The Social Security Administration (SSA) considers different types of income, such as:
- Earned Income: Money from wages or self-employment.
- Unearned Income: Benefits from Social Security, pensions, and even gifts.
- In-Kind Support: If someone provides food or housing at little to no cost, this might be counted as income.
- Deemed Income: Sometimes, a portion of a parent’s or spouse’s income may count as the applicant’s income, especially for children under 18.
- The Social Security Administration (SSA) considers different types of income, such as:
SSI for Children vs. Adults:
- Adults (18 and older): Must demonstrate that they cannot work full-time due to a physical or mental impairment.
- Children (under 18): Need to have a serious condition that limits their daily activities significantly. For children, a portion of the parents’ income may be considered as part of the child’s resources.
Tips for Managing SSI Benefits:
- If you are providing food or housing for your adult child, consider writing a monthly receipt for food and rent. This can prevent these items from being classified as “In-Kind Support,” which could lower the SSI benefit.
- Changes in income, resources, or living arrangements should be reported to the SSA within 10 days to avoid any issues or penalties.
Applying for SSI
The process can be daunting, but help is available. Start by visiting the Social Security Administration website to learn more or apply. You can also connect with local SSA offices to ask questions and get guidance through the application process. Proper planning and understanding the eligibility requirements can make a significant difference.
Special Needs Trusts
What is a Special Needs Trust?
A Special Needs Trust (SNT) is a legal arrangement designed to manage funds for a person with disabilities without affecting their eligibility for public benefits like Medicaid and Supplemental Security Income (SSI). By placing assets in a trust, families can improve their loved one’s quality of life while preserving essential government assistance.
Why Consider a Special Needs Trust?
If a person with a disability receives significant assets (e.g., gifts, inheritance, savings), it can affect their eligibility for benefits. An SNT ensures these funds can be used to support their needs without risking the loss of important assistance programs. Families can continue to provide financial security and comfort, even after they’re no longer able to offer direct care.
Key Points About Special Needs Trusts:
Types of Trusts:
- First-Party Trusts: Funded with the beneficiary’s own assets (e.g., injury settlement, inheritance). It requires any remaining funds to repay Medicaid at the beneficiary’s death.
- Third-Party Trusts: Created and funded by someone other than the beneficiary (e.g., parents, grandparents). No repayment to Medicaid is required after the beneficiary’s passing.
- Pooled Trusts: Managed by nonprofit organizations, these trusts combine resources from multiple beneficiaries while keeping individual accounts separate. Pooled trusts can be either first-party or third-party.
Revocable vs. Irrevocable:
- Revocable: Can be modified or canceled during the creator’s lifetime. Often used for third-party trusts.
- Irrevocable: Cannot be changed once established, providing long-term stability and protection.
Improving Quality of Life: Funds from a Special Needs Trust can be used to enhance the beneficiary’s daily life, covering things not typically paid for by public benefits, such as:
- Educational and recreational activities
- Specialized therapy or medical care
- Travel, hobbies, and social engagements
- Personal care items and technology
Planning for the Future: Creating an SNT allows families to choose the right team to manage their loved one’s needs, ensuring a stable and supportive living arrangement. Selecting the right type of trust depends on the family’s goals and the beneficiary’s situation.
For guidance on setting up a Special Needs Trust, consult a legal expert who can help you understand your options and design a plan that best suits your family’s needs.
ABLE Account
What is an ABLE Account?
An ABLE (Achieving a Better Life Experience) account is a state-managed savings program for individuals with disabilities. It allows families to set aside funds for their loved one’s care while enjoying special tax benefits. ABLE accounts help cover essential expenses without affecting eligibility for key government programs like Medicaid and Supplemental Security Income (SSI).
Why Consider an ABLE Account?
An ABLE account offers a tax-advantaged way to save for various disability-related expenses. Families can use these funds for a wide range of needs, from everyday living costs to specialized care, all while ensuring the beneficiary retains their eligibility for critical public benefits.
Key Points About ABLE Accounts:
Tax Benefits:
- Earnings on the money in an ABLE account grow tax-free, and withdrawals are also tax-exempt as long as they are used for Qualified Disability Expenses.
- Qualified expenses can include education, housing, transportation, healthcare, and more.
Eligibility:
- To open an ABLE account, the beneficiary must have developed their disability before age 26. Many states allow residents from other states to open an account, offering flexibility for families across the country.
- Annual contributions are capped, but multiple individuals (e.g., family members, friends) can contribute up to the total limit.
Protection for Benefits:
- Funds saved in an ABLE account do not count against the asset limits for SSI and Medicaid, providing financial security without risking essential support.
- If the beneficiary passes away, remaining funds can be used to pay outstanding expenses, such as funeral costs, before reimbursing the state for Medicaid services.
Planning for the Future:
- An ABLE account can complement other financial tools like Special Needs Trusts, giving families more flexibility in planning for their loved one’s long-term care and wellbeing.
For more information and to see if an ABLE account is right for your family, visit the ABLE National Resource Center.
Autism Speaks – Financial Planning Toolkit
What is the Financial Planning Toolkit?
The Autism Speaks Financial Planning Toolkit is a resource designed to help families of children with special needs create a comprehensive financial plan. It provides clear guidance on managing finances, understanding benefits, and preparing for the future.
Key Features of the Financial Planning Toolkit:
Comprehensive Guidance:
- The toolkit covers essential topics such as budgeting, savings, and managing expenses related to caregiving.
- It includes information on navigating government benefits, understanding insurance, and preparing for long-term care needs.
Step-by-Step Planning:
- Families can follow step-by-step instructions to build a financial plan that addresses both immediate and future needs.
- The toolkit provides checklists and templates to simplify the planning process.
Accessible Resource:
- The toolkit is available online, allowing families to access the information at their own pace.
For more details and to access the toolkit, visit the Autism Speaks Financial Planning Toolkit.
Global Genes - Financial Advocacy in RARE
Key Features of Financial Advocacy in RARE:
Support Across All Ages:
- Resources are available to assist adults of all ages living with rare conditions, addressing diverse financial and healthcare needs.
Navigating Financial Challenges:
- Guidance is provided on managing financial hardship, understanding insurance options, and accessing medical care.
Healthcare Access:
- Information on overcoming barriers to healthcare, including tips on handling insurance claims and finding patient assistance programs.
For more information, visit the Global Genes Financial Advocacy in RARE.
Insurance Guide: A State-by-State Resource for Insurance and Waiver Support
What is the State-by-State Insurance Guide?
This comprehensive guide, created by the Angelman Syndrome Foundation, helps families navigate insurance options and Medicaid waivers across different states. It provides clear, state-specific information on available programs, eligibility, and application processes.
Key Features of the State-by-State Insurance Guide:
Comprehensive State Information:
- Detailed descriptions of Medicaid, waivers, and other insurance options, tailored for each state.
- Helps families understand what benefits are available and how to access them.
Navigating Insurance and Waivers:
- Offers guidance on managing complex insurance processes and finding the right coverage for individuals with disabilities.
- Includes tips on understanding eligibility, navigating waitlists, and handling application challenges.
Regularly Updated:
- The guide is updated to reflect changes in state programs, ensuring that families have the latest information.
Access the guide through the Angelman Syndrome Foundation.
State Medicaid and CHIP Program
What are Medicaid and CHIP?
Medicaid and the Children’s Health Insurance Program (CHIP) provide essential health coverage to low-income individuals, families, and children. These state-run programs help cover medical services for those who qualify, with ongoing updates and improvements to expand access.
Key Features of Medicaid and CHIP:
Expanded Coverage:
- Many states are broadening eligibility to include more low-income adults, children, and families, ensuring wider access to healthcare services.
Streamlined Enrollment:
- States are modernizing enrollment, eligibility, and renewal processes, making it easier for families to apply and maintain coverage. Coordination with the Health Insurance Marketplace ensures no wrong door to coverage.
Adapting to New Flexibilities:
- Programs are utilizing the flexibility provided by the Affordable Care Act to improve service delivery, including expanded benefits and coordinated care.
For more information and to explore state-specific details, visit the Medicaid State Overviews.
Health Insurance Tips
What is This Resource?
Navigating health insurance can be complex, especially for rare disease patients and caregivers. This resource, provided by NORD, offers insights on how to effectively use your health insurance plan, understand coverage, and manage the approval process.
Key Features of the Webinar:
Understanding Insurance Basics:
- Learn how health insurance works, including coverage details, benefits, and common terms.
Navigating the Approval Process:
- The webinar provides a step-by-step guide on how to handle pre-authorizations, claims, and appeals, helping you get the care you need.
Reversing Denials:
- Tips and strategies are shared on how to appeal and successfully reverse insurance claim denials, ensuring you can access the treatments and services required.
Watch the full webinar to get practical advice on making the most of your health insurance plan on YouTube.
Kids Waivers
Key Features of Kids’ Waivers:
Comprehensive Information:
- The resource compiles details on various waiver programs across the United States, helping families understand the options available for their child’s care.
State-by-State Guidance:
- Access specific information for each state, including eligibility criteria, services offered, and how to apply. This makes it easier for families to navigate complex systems and find the support they need.
Focused on Children’s Needs:
- Programs like Katie Beckett and TEFRA are designed to help children with disabilities access Medicaid-funded services, even if they don’t typically qualify under their family’s income level.
For more information, visit Kids’ Waivers.
Title V Programs for Children with Special Needs
What are Title V Programs?
Title V programs, funded by the Maternal and Child Health Services Block Grant, provide essential services for children with special healthcare needs. Each state receives funding to support programs that improve the health and well-being of women, children, and families, including those with specific medical needs.
Key Features of Title V Programs:
State-Specific Services:
- Each state customizes its Title V programs to address local needs, meaning services can vary widely. These may include medical care, therapy, support services, and community resources for families.
Broad Range of Support:
- Title V programs aim to ensure access to quality healthcare, offer assistance with care coordination, and provide support for developmental and physical health needs.
Navigating State Variations:
- Because each state tailors its programs, the names and types of services might differ. Families may need to explore their state’s specific offerings to find what is available.
For more details on state-specific Title V programs, visit the Maternal and Child Health Bureau.
Good Rx
What is GoodRx?
GoodRx is a free service that helps you compare prescription drug prices and find discounts at pharmacies nationwide. With the rising cost of medications, GoodRx offers an easy way to identify the lowest-cost options, ensuring you pay less for the prescriptions you need.
Key Features of GoodRx:
Price Comparison:
- GoodRx gathers current prices from multiple pharmacies, showing where you can get your prescription for the lowest cost. Prices can vary significantly, even between nearby locations.
Significant Savings:
- On average, users save $276 per year on prescriptions. GoodRx offers discounts that help reduce out-of-pocket expenses, especially for those without insurance or with high copays.
Free and Easy to Use:
- There are no fees, and no personal information is required to use GoodRx. Simply search for your medication, compare prices, and present the GoodRx coupon at your chosen pharmacy.
To learn more or start saving, visit GoodRx.
Needy Meds
What is NeedyMeds?
NeedyMeds is a nonprofit organization that provides information on programs to help individuals who cannot afford medications and healthcare costs. It connects users to resources, including government programs, low-cost clinics, and prescription assistance services.
Key Features of NeedyMeds:
Comprehensive Resource Directory:
- Access information on a wide range of programs, including prescription assistance, medical and dental clinics, and financial aid for healthcare expenses.
Disease-Specific Aid:
- Find financial assistance programs tailored to specific conditions, helping patients manage the costs of their treatment.
Easy Access and Support:
- Explore the NeedyMeds website or contact their support team directly at 800-503-6897 for guidance on finding the right assistance.
For more information, visit NeedyMeds.
PhRMA’s Medicine Assistance Tool (MAT)
What is the Medicine Assistance Tool (MAT)?
The Medicine Assistance Tool (MAT) is a search engine developed by PhRMA to help patients, caregivers, and healthcare providers find resources available through various biopharmaceutical industry programs. While MAT itself is not a patient assistance program, it connects users to a wide range of support options.
Key Features of MAT:
Comprehensive Search Engine:
- Users can search for assistance programs that provide financial support, access to medications, and other resources offered by biopharmaceutical companies.
Resource for Patients, Caregivers, and Providers:
- Designed to help everyone involved in a patient’s care learn about available support, including co-pay assistance, free or discounted medications, and more.
Easy Access to Information:
- Simply enter the name of a medication or pharmaceutical company to see a list of available assistance programs, making it easy to find help quickly.
To explore the available resources, visit the Medicine Assistance Tool.
NORD Rare Care Assistance Program
What is the NORD Rare Care Assistance Program?
The NORD Rare Care Assistance Program offers support to patients who need help accessing life-saving or life-sustaining medications. Since 1987, NORD has provided resources to ease the financial burden of medical care for individuals living with rare diseases.
Key Features of the Rare Care Assistance Program:
Medication Assistance:
- Helps cover the cost of medications that might not be affordable through traditional insurance, ensuring patients can access necessary treatments.
Financial Support for Insurance Costs:
- Provides assistance with insurance premiums, co-pays, and other related expenses, helping patients manage out-of-pocket costs.
Diagnostic and Travel Assistance:
- Supports patients with the cost of diagnostic testing and travel for clinical trials or consultations with specialists, ensuring access to expert care.
Special Programs:
- NORD runs condition-specific programs, such as support for those with Lennox-Gastaut Syndrome. For more information, contact NORD directly at 1-855-864-4028 or via email at [email protected].
The Patient Advocate Foundation
The Patient Advocate Foundation
What is the Patient Advocate Foundation (PAF)?
The Patient Advocate Foundation (PAF) offers case management services for individuals who are uninsured or underinsured and facing life-threatening or chronic illnesses. PAF helps patients navigate healthcare challenges, including accessing care and managing insurance issues.
Key Services Provided by PAF:
Case Management:
- Assistance with accessing necessary medical care, navigating insurance, and managing treatment-related expenses.
Co-Pay and Financial Assistance:
- Support with co-pays, premiums, and other healthcare costs to reduce the financial burden on patients.
Disability and Insurance Support:
- Guidance on applying for Social Security disability benefits and appealing denied insurance claims.
National Financial Resource Directory:
- A searchable directory to help patients find local and state-specific financial assistance programs.
For more information or to speak with a PAF representative, call 800-532-5274 or visit the Patient Advocate Foundation.
Chive Charities
What is Chive Charities?
Chive Charities provides support to individuals facing unique challenges, focusing on three main areas: rare medical diagnoses, first responders, and veterans. Through grants, they help improve the quality of life for recipients by addressing needs that are often not covered by insurance.
Key Types of Assistance from Chive Charities:
Therapy and Equipment:
- Funding for therapy sessions and equipment that might not be covered by traditional insurance plans.
Accessibility Modifications:
- Grants for handicap-accessible modifications to homes and vehicles, improving daily mobility and independence.
Mobility and Adaptive Devices:
- Assistance with the purchase of wheelchairs, adaptive bikes, and other mobility aids, as well as developmental and learning devices.
Medical Needs:
- Financial support for various other medical needs, as recommended by healthcare professionals.
To learn more or apply for a grant, visit Chive Charities.
Cerner Charitable Foundation
What is the Cerner Charitable Foundation?
The Cerner Charitable Foundation provides financial assistance to families who need help covering their child’s medical expenses. They accept grant applications for various medical needs from U.S. residents and select international locations, helping to alleviate financial burdens associated with essential care.
Key Areas of Support from Cerner Charitable Foundation:
Medical Treatment:
- Funding for clinical procedures, medications, therapies, prosthetics, and other medical treatments.
Medical Equipment:
- Assistance with the cost of wheelchairs, assistive devices, hearing aids, and other essential care equipment.
Displacement and Travel:
- Support for lodging (when charitable housing isn’t available), gas, parking, and other transportation needs related to a child’s care.
Vehicle Modifications:
- Grants for modifications such as lifts, ramps, and transfer boards to improve mobility and accessibility.
To learn more or apply for funding, visit the Cerner Charitable Foundation.
Patient Services Inc
What is Patient Services Inc (PSI)?
Patient Services Inc (PSI) is a nonprofit organization dedicated to supporting individuals with chronic illnesses by offering financial assistance and guidance. PSI helps patients manage the costs of medication, insurance premiums, and other related expenses.
Key Services Provided by PSI:
Medication Assistance:
- Financial support to help cover the cost of essential medications, reducing out-of-pocket expenses.
Insurance Premium and Co-Pay Assistance:
- Assistance with health insurance premiums and co-pays, ensuring continued access to necessary healthcare coverage.
Insurance Navigation and Legal Guidance:
- Help with understanding and navigating health insurance plans, as well as legal advice related to insurance matters.
To learn more or apply for assistance, visit Patient Services Inc.
Patient Advocate Foundation
What is the Patient Advocate Foundation (PAF)?
The Patient Advocate Foundation (PAF) is a national nonprofit organization that provides direct services to individuals with chronic, life-threatening, and debilitating illnesses. PAF helps patients access the care and treatment they need, offering support to navigate complex healthcare systems.
Key Services Provided by PAF:
Access to Care:
- Assistance with finding and accessing the necessary medical care and treatments recommended by healthcare providers.
Insurance and Financial Navigation:
- Help with understanding insurance benefits, managing medical bills, and addressing issues related to coverage and costs.
Case Management:
- Dedicated case managers provide personalized support, guiding patients through healthcare challenges and connecting them with resources.
For more information, visit the Patient Advocate Foundation.
Partnership for Prescription Assistance (PPA)
What is the Partnership for Prescription Assistance (PPA)?
The Partnership for Prescription Assistance (PPA) is a resource developed by America’s biopharmaceutical companies to help patients access affordable medications. Through programs like the Medicine Assistance Tool (MAT), PPA connects individuals with resources and cost-sharing options to reduce out-of-pocket expenses.
Key Features of PPA:
Access to Medication Assistance:
- PPA helps patients find programs that offer discounts or free medications, ensuring that cost is not a barrier to essential treatment.
Cost-Sharing Programs:
- Through tools like MAT, patients can discover various programs to help lower prescription costs, whether they have insurance or not.
Easy to Use:
- Patients, caregivers, and healthcare providers can use PPA’s search tools to quickly find and access relevant assistance programs.
To explore available resources, visit the Medicine Assistance Tool.
Healthwell Foundation
Key Areas of Support from HealthWell:
Prescription Copays:
- Assistance to help patients cover the cost of medication copays, reducing their out-of-pocket expenses.
Insurance Premiums and Deductibles:
- Financial support for health insurance premiums, deductibles, and coinsurance, making it easier to maintain coverage.
Pediatric Treatment and Travel Costs:
- Help with costs related to pediatric treatments and travel expenses for accessing medical care.
For more information or to apply for assistance, visit the HealthWell Foundation.
United Healthcare Children’s Foundation
What is UHCCF?
The UnitedHealthcare Children’s Foundation (UHCCF) provides grants to help families cover medical expenses for children that are not fully covered by their commercial health insurance. UHCCF aims to bridge the gap between the care a child needs and what insurance will pay for.
Key Features of UHCCF Grants:
Financial Assistance for Medical Needs:
- Grants help families pay for medical treatments, therapies, and equipment that are not covered or only partially covered by their insurance plan.
Coverage for a Wide Range of Services:
- Support can be used for various medical services, including surgeries, prescriptions, therapies, and assistive devices.
Eligibility:
- Available to families with children under the age of 16 who have a commercial health insurance plan. Specific eligibility criteria apply.
To learn more or apply for a grant, visit the UnitedHealthcare Children’s Foundation.
Kiddos Clubhouse Foundation
What is the Kiddos Clubhouse Foundation?
The Kiddos Clubhouse Foundation provides therapy scholarships to help families of children with special needs afford essential therapies. By offering financial support, the foundation aims to alleviate the burden of treatment costs and ensure children receive the care they need.
Key Features of Kiddos Clubhouse Foundation:
Therapy Scholarships:
- Financial assistance for therapies that are crucial for a child’s development, including physical, occupational, and speech therapies.
Partnerships and Community Support:
- Grants are made possible through partnerships with corporate donors, private supporters, and charitable events.
Focus on Improving Lives:
- The foundation’s mission is to support families in providing critical care, helping children achieve their full potential.
To learn more about eligibility and apply for a scholarship, visit the Kiddos Clubhouse Foundation.
Pediatric Epilepsy Surgery Alliance
What is the Pediatric Epilepsy Surgery Alliance?
The Pediatric Epilepsy Surgery Alliance offers support to families who need financial assistance for travel and lodging when seeking surgical evaluations for epilepsy treatment. The Dreams for Danny program provides funding to help cover these expenses.
Key Features of the Dreams for Danny Program:
Travel Assistance:
- Provides up to $1,000 in approved funds to help cover the costs of airfare, ground transportation, and lodging for families traveling to epilepsy surgery consultations.
Support for Surgical Evaluations:
- Financial assistance is available for families who need to travel for multi-day evaluations, including video EEG monitoring, imaging, and other necessary tests.
Honoring Danny’s Legacy:
- The program is funded by a generous donation in honor of Danny, a young boy whose successful epilepsy surgery inspired this initiative.
To learn more or apply for the travel scholarship, visit the Dreams for Danny Program.
Giving Angels Foundation
What is the Giving Angels Foundation?
The Giving Angels Foundation provides grants to help children with physical disabilities from lower-income families access essential resources. The foundation aims to enhance daily living by covering the costs of necessary equipment, medical supplies, and more.
Key Features of Giving Angels Foundation Grants:
Support for Essential Needs:
- Grants can be used to purchase life-changing equipment, medical supplies, and therapeutic toys. Assistance is also available for essential family bills and specialized camps.
Eligibility:
- Families must have a household income below $50,000 per year, and grants are available to children under 21 with a physical disability.
One-Time Grant:
- Each eligible family can receive a one-time grant of up to $500 to help cover critical expenses.
To learn more or apply for a grant, visit the Giving Angels Foundation.
Keep Swimming Foundation
What is the Keep Swimming Foundation?
The Keep Swimming Foundation provides financial assistance to families of critically ill patients who require extended inpatient care at accredited hospitals in the U.S. The foundation helps cover external costs that families often face while supporting their loved ones during prolonged hospital stays.
Key Areas of Support from Keep Swimming Foundation:
Assistance with Travel and Lodging:
- Financial relief for hotel accommodations, bedside meals, parking, public transportation, and gasoline to ease the burden of hospital visits.
Support for Essential Living Expenses:
- Assistance with rent, mortgage payments, and other essential costs, helping families maintain stability during extended hospital care.
Focused on Extended Inpatient Care:
- Designed to support families when insurance doesn’t cover the additional costs of long-term hospital stays.
To learn more or apply for assistance, visit the Keep Swimming Foundation.
Kelly Anne Dolan Memorial Fund
What is the Kelly Anne Dolan Memorial Fund?
The Kelly Anne Dolan Memorial Fund provides financial assistance to families of children with serious illnesses, disabilities, or injuries who are living or receiving treatment in Pennsylvania, New Jersey, or Delaware. Support is offered through referrals from healthcare professionals to cover essential expenses not paid for by insurance.
Key Features of the Fund:
Eligibility and Referrals:
- Assistance is available only through referrals made by healthcare professionals, such as social workers, case managers, or doctors. Families cannot apply directly.
Covered Expenses:
- Support can be used for essential costs like utility bills, rent or mortgage payments, transportation, disability needs, and more.
- Other expenses include child care, co-pays, medically necessary dietary supplements, and funeral costs. Funds are paid directly to vendors or creditors.
Focused Regional Support:
- Available to families residing or receiving care in Pennsylvania, New Jersey, or Delaware, ensuring local support where it is needed most.
For more information, visit the Kelly Anne Dolan Memorial Fund.
KNOW Autism
What is KNOW Autism?
KNOW Autism offers financial assistance programs to support children with Autism Spectrum Disorder (ASD) in accessing therapeutic treatments and inclusive programs. The foundation provides scholarships and funding to help cover the costs of essential services that may not be fully covered by insurance.
Key Programs Offered by KNOW Autism:
Tuition & Therapy Assistance Program:
- Scholarships ranging from $1,000 to $5,000 are available to children aged 12 months to 18 years with a clinical diagnosis of ASD.
- Funding can be used for behavioral interventions, occupational and speech therapy, social skills groups, and specialized education programs.
Special Interest Fund:
- Awards between $500 and $1,000 are provided to help children participate in adaptive and inclusive activities beyond traditional autism therapies.
- Eligible programs include specialized camps, music and art therapy, yoga, therapeutic horseback riding, adaptive swim lessons, and services from autism/disability advocates.
To learn more or apply for assistance, visit the KNOW Autism Foundation.
Danny Did Grant Program
What is the Danny Did Grant Program?
The Danny Did Foundation (DDF) provides grants to help families afford seizure detection and prediction devices, as well as other technologies that support epilepsy care. While no device can fully prevent epilepsy-related mortality, these technologies are designed to enable timely intervention by caregivers, potentially reducing risks.
Key Features of the Danny Did Grant Program:
Support for Seizure Detection Devices:
- Grants are available to help cover the cost of devices that detect or predict seizures, allowing caregivers to respond more quickly and effectively.
Focus on Safety and Intervention:
- The program aims to improve safety for individuals with epilepsy by providing access to technology that can alert caregivers to seizures, reducing associated risks.
Application Process:
- Families can review eligible products and devices on the Danny Did website before completing the grant application.
For more information or to apply, visit the Danny Did Foundation.
Small Steps in Speech
What is Small Steps in Speech?
Small Steps in Speech provides grants to support children with speech and language disorders. These grants help fund therapies, treatments, and communication devices, aiming to improve children’s communication skills and overall quality of life.
Key Features of Small Steps in Speech Grants:
Therapies and Treatments:
- Funding is available for various therapies and services that aid in speech and language development, including speech therapy and other related treatments.
Support for Communicative Devices:
- Grants can be used to purchase devices that assist children in improving their ability to communicate effectively.
Eligibility:
- Applications are accepted for children aged 3 to 22, and families must have a combined household income under $100,000 to qualify.
For more details or to apply, visit the Small Steps in Speech.
The Orange Effect Foundation
What is The Orange Effect Foundation?
The Orange Effect Foundation provides grants to children and young adults with speech disorders, helping them access technology and therapy that improve their communication skills. The foundation focuses on ensuring that those who need consistent speech therapy or equipment can receive it, regardless of financial barriers.
Key Features of The Orange Effect Foundation Grants:
Support for Speech Therapy:
- Grants are available to cover the cost of regular speech therapy sessions, helping individuals develop essential communication skills.
Funding for Communication Devices:
- The foundation also provides financial assistance for devices that support speech and language development, enabling more effective communication.
Focus on Accessibility:
- By filling a critical gap, the Orange Effect Foundation ensures that children and young adults with speech disorders can access the resources they need.
For more information or to apply for a grant, visit The Orange Effect Foundation.
Wheelchairs 4 Kids
What is Wheelchairs 4 Kids?
Wheelchairs 4 Kids is a nonprofit organization dedicated to helping children with mobility challenges live fuller, more active lives. Despite the name, their support extends beyond wheelchairs to include a wide range of equipment and modifications that improve mobility and accessibility.
Key Services Offered by Wheelchairs 4 Kids:
Mobility Equipment:
- Provides wheelchairs, gait trainers, AFOs (ankle-foot orthotics), hoyer lifts, adaptive strollers, and adaptive bikes to enhance a child’s mobility.
Accessibility Solutions:
- Assistance with home modifications (if the family owns the home) and vehicle modifications, making everyday environments more accessible for children with mobility needs.
Comprehensive Support:
- Also offers bathing solutions and other essential adaptive equipment, ensuring children have the resources to live life to its fullest.
Eligibility:
- Available to children under the age of 21, with a medical professional verifying their condition and mobility requirements.
For more information or to apply, visit Wheelchairs 4 Kids.
The Mobility Resource
What is The Mobility Resource?
The Mobility Resource offers a comprehensive directory of grants and assistance programs across all 50 states to help individuals finance handicap-accessible vehicles and adaptive equipment. The directory connects users with resources to make mobility products more affordable.
Key Features of The Mobility Resource:
State-by-State Directory:
- Provides detailed information on grants and financial assistance programs available in each state, making it easier to find local support.
Funding for Adaptive Equipment:
- Assistance options to help cover the costs of wheelchair vans, scooters, wheelchair lifts, adaptive driving equipment, and other mobility aids.
Support for Mobility Independence:
- Helps individuals and families access the equipment they need to enhance mobility and independence, ensuring greater freedom and accessibility.
For more information, visit The Mobility Resource.
Lili's Lift
What is Lili’s Lift?
Lili’s Lift is a nonprofit organization dedicated to empowering children with disabilities by providing resources for essential home renovation projects. Through education, advocacy, and community support, Lili’s Lift helps families create more accessible living spaces for their children.
Key Features of Lili’s Lift:
Home Renovation Support:
- Provides funding, building materials, and in-kind donations for one-time home modifications that improve accessibility and mobility for children with disabilities.
Community Empowerment:
- Engages volunteers and community members to participate in projects, fostering a spirit of support and collaboration.
Focus on Education and Advocacy:
- Promotes awareness and advocates for the needs of children with disabilities, encouraging community involvement and understanding.
For more information, visit Lili’s Lift.
Kids Mobility Network
Kids Mobility Network is a nonprofit organization that provides children with disabilities access to complex rehab technology and durable medical equipment. Their mission is to improve mobility and independence by supplying essential items like wheelchairs, walkers, and other adaptive devices.
Key Features of Kids Mobility Network:
Access to Essential Equipment:
- Offers a range of durable medical equipment, including wheelchairs, walkers, and other adaptive devices, to support children’s mobility and daily needs.
Focus on Complex Rehab Technology:
- Provides specialized equipment tailored to meet the unique needs of each child, ensuring they receive the best possible support for their condition.
Commitment to Integrity and Care:
- Operates with a focus on compassion, making sure that families receive the assistance they need with respect and integrity.
For more information or to apply for assistance, visit Kids Mobility Network.
The Mobility Resource
What is The Mobility Resource?
The Mobility Resource provides a comprehensive directory of grants and financial assistance programs across all 50 states, helping individuals access funding for handicap-accessible vehicles and adaptive equipment. This resource connects users with support to make essential mobility products more affordable.
Key Features of The Mobility Resource:
State-by-State Assistance Directory:
- Offers detailed information on grants and programs available in each state, making it easy to find local funding options for mobility needs.
Funding for Adaptive Equipment:
- Assistance to help finance wheelchair vans, scooters, wheelchair lifts, adaptive driving equipment, and other essential mobility aids.
Support for Greater Independence:
- Aims to enhance mobility and independence by helping individuals access the equipment they need to live more freely.
For more information, visit The Mobility Resource.
Understanding Variants
Knowing whether an SCN8A variant is a gain-of-function or loss-of-function is important for determining treatment and anticipating symptoms. a variant at SCN8A.net.
Genetic Testing
Recommended Types of Testing
Familial Testing and Counseling
Collaborating For A Cure
Bringing Improved Quality of Life
As leaders in SCN8A research, we bring the latest data directly to families and doctors around the globe.
Advancing Research
The International SCN8A Registry is the most comprehensive repository of caregiver reported SN8A data. We also produced the first-ever Consensus on the Diagnosis and Treatment of SCN8A as a baseline standard of care.
Strategic Advocacy
Through our tireless efforts to bring awareness to SCN8A and other rare epilepsies we helped form and run the Epilepsies Action Network, working to raise awareness of and funding for the rare epilepsies.
Family First
We put SCN8A families first in all that we do. Our mission is to bring improved quality of life to everyone with SCN8A until we ultimately find a cure.
See The Good We've Done With Your Help!
Because of support from individuals and our industry partners, we are able to bring life changing information directly to SCN8A families.
SCN8A Family Meetings provide a place for families to connect, share tactics and strategies, and ask questions directly to renowned geneticist Dr. Michael Hammer.
Meet Our SCN8A Superheroes
Braum
Mauro
Xavier
Ksawier
Sadie
News & Updates .
Our Sponsors .
Our Sponsors
