Connecting with MA Families
Connect with Massachusetts Duchenne Families on Facebook through our Connect Program. You will need to request to be add to the group first.
Financial Resources
- Spectrum for Hope
Dedicated to improving the quality of life for families with multiple children with special needs. SFH is committed to supporting these families by providing funding or financial assistance for various therapeutic, educational, medical or recreational opportunities.
Website - Catastrophic Illness in Children Fund
The Catastrophic Illness in Children Relief Fund (CICRF) helps families bear the excessive financial burdens associated with the care of children with special health care needs and disabilities. CICRF is a payor of last resort. It provides financial assistance for Massachusetts families with children experiencing a medical condition requiring services that are not covered by a private insurer, federal or state assistance, or any other financial source.
Website - Challenged Athletes Foundation
Expensive equipment or training shouldn’t be the biggest hurdle athletes face in their endeavors. Access for Athletes is committed to helping athletes overcome financial impediments by providing funding grants for equipment, training, coaching and competition costs.
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- 4 Jake’s Sake
The 4 Jake’s Sake Foundation is a charitable organization helping families living with Duchenne Muscular Dystrophy make their homes and lives more accessible
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- Jett Giving Fund
The Jett Giving Fund assists Duchenne families in purchasing assistive technology, lilfts, vans and other tangible items that medical insurance often will not cover. Family must initiate fundraising through GoFundMe or other means and raise 50% of the cost, plus an additional 10% of costs to donate towards this fund to help other families.
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- Different Needz
The Different Needz Foundation has a mission to provide grants to individuals with developmental disabilities, their families and organizations that support them to provide medical equipment and/or services.
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- Challenged America Foundation
The goal of the My Gym Challenged America Foundation is to provide equipment and services that enhance the quality of life and improve the physical, cognitive, emotional and social development of children who are physically or developmentally challenged and those coping with chronic illness.
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- Aubry Rose Foundation
The Aubry Rose Foundation mission is to help families caring for children with life threatening illnesses by providing emotional and financial support.
Website - Cerner Charitable Foundation
Cerner Charitable Foundation provides funding for children with health-related needs when insurance and other financial resources have been exhausted.
Website - Giving Angel Foundation
Giving Angel Foundation awards grants to lower income families with child living with a disability
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- Kya’s Krusade
Kya’s Krusade is a non-profit that identifies programs and tools that enable children with physical disabilities to reach their maximum potential.
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- Massachusetts Motor Vehicle Tax Exemption
Parents or legal guardians of disabled individual are exempt from sales tax on purchase of a handicapped vehicle (form MVV-33 must be filed). Additionally, parents or legal guardians can file for excise tax abatement (form 126-MVE).
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Equipment Resources
A list of organizations which offer opportunities for patients and families to obtain low cost, rental and donated equipment, including recreational wheelchairs, assistive technology devices and power wheelchairs.
- smile mass
SMILE Mass has several pieces of equipment for families to borrow and take anywhere with them, FREE OF CHARGE. Our current inventory includes: 10 floating beach wheelchairs, 2 adaptable bikes, and 5 jogging strollers. Inventory is often repleted.
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- Wheelchairs 4 Kids
Wheelchairs 4 Kids’ plan involves more than providing wheelchairs for America’s disabled children. Their goal is to give every child with mobility challenges the best opportunity to live life at its’ fullest. The child must be under the age of 21 and have a member of their medical team verify their medical condition and mobility needs.
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- Mass Match REquipment
REquipment is a durable medical equipment (DME) re-use program offering free refurbished wheelchairs, scooters, shower chairs and more to adults, children and elders living in Massachusetts.
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Transportation Resources
Personal vehicle resources
- Massachusetts Vehicle Tax Exemptions
Parents or legal guardians of disabled individual are exempt from sales tax on purchase of a handicapped vehicle (form MVV-33 must be filed). Additionally, parents or legal guardians can file for excise tax abatement (form 126-MVE).
Website - Disability Driving School – CMSC
Individuals with physical disabilities can learn to drive through our CMSC Auto Schools.
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Accessibility & Recreation
Camps and camp programs
- Camp Promise
The mission of Camp Promise is to provide a barrier-free, weeklong overnight camp for kids, teens, and adults with muscular dystrophy or select neuromuscular diseases—regardless of age, capability, or ability to pay. Our camper-focused programming builds independence, confidence, and life skills through traditional camp activities and by bringing campers new experiences through adaptation, technology, creativity, and special guests.
Website - Muscular Dystrophy Association (MDA) Summer Camp
MDA Summer Camp provides thousands of kids with muscular dystrophy and related muscle-debilitating diseases “the best week of the year.” At MDA Summer Camp, kids are living beyond limits in a place where anything is possible. It’s a week where they’re free to enjoy adventures like horseback riding, swimming and fishing, develop lifelong friendships, and build self-confidence and independence.
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- Dream Day on Cape Cod
Dream Day on Cape Cod is a non-profit organization based in Brewster, Massachusetts, dedicated to bringing respite into the lives of children with serious and/or life-threatening illnesses and their families. Each summer there are eight sessions of family camp – bringing families together for a week of fun, family, and respite.
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- Double H Ranch
Double H Ranch offers free overnight camp in Lake Luzerne, NY for children with life-threatening illnesses. Camp has accessible indoor/outdoor pool, high ropes, archery, horseback riding and each camp week includes a trip to Six Flags NE. They also offers two summer weeks for siblings (with or without DMD sibling), as well as adaptive/traditional ski weekends for the entire family.
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- Easter Seals of Massachusetts
Easter Seals offers MA residents 8-22 with disabilities the opportunity to enjoy summer camp activities with campers who do not have disabilities
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Recreation
- Access Recreation Boston
Access Recreation Boston connects people with disabilities to accessible recreation opportunities in and around Boston (i.e. sailing lessons, horseback riding, adaptive golf, fishing, etc.)
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- Accessible Playgrounds
Accessible Playgrounds provides an international list of accessible playgrounds. The link below is a Massachusetts specific list of playgrounds.
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- JB’s Keys to DMD
Dedicated to increasing awareness of Duchenne while appropriating funds for quality care and research. Offers adaptive sports scholarships for skiing and sailing.
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- Discovery Woods
Located at the Discovery Museum in Acton, this is a fully accessible nature playscape and treehouse designed by DIY Networks and built by The Treehouse Guys! Open year round.
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- Miracle League Of Massachusetts
Volunteer-based non-profit organization that gives children with disabilities the chance to play baseball as part of a team in an organized league at no cost.
Website - Piers Park Sailing
Located on waterfront in East Boston, PPSC is a non-profit community sailing center dedicated to providing 100% accessible sailing opportunities for disabled individuals of all ages and abilities.
Website - Spaulding Adaptive Sports Centers
Spaulding Adaptive Sports Centers are open to all in the community living with disabilities. Children can participate in many land and water-based activities under the supervision of adaptive sports professionals. Located in Boston, Sandwich and Salem.
Website - Northeast Passage
Creating an environment where individuals with disabilities can enjoy recreation with the same freedom of choice, quality of life, and independence as their non-disabled peers. Northeast Passage does this by developing, delivering, and evaluating innovative barrier-free recreation and health promotion programs. Their guiding principles are promoting client independence through education and problem solving, creating opportunities, and collaborating with others to create a strong network of accessible recreation.
Website - Above the Clouds
Above the Clouds bring joy and hope through the wonder of small aircraft flight to children and teens who are seriously ill, disabled, underserved or facing other serious adversity. Out of Norwood Airport they have two programs: Dream Flyers (one time flight where children fly with a Dream Pilot in a small airplane or helicopter), and Cadet Flyers (where teens are introduced to aviation by Discovery Pilot Mentors. They have the opportunity to fly regularly with their Discovery Pilots.)
Website - Challenged Athletes
Provides grants for adaptive sports-related equipment.
Website - Disability Driving School – CMSC
Individuals with physical disabilities can learn to drive through our CMSC Auto Schools.
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Housing
- Massachusetts’ Department of Health and Human Services
Massachusetts State Government Dept. of Health and Human Services webpage listing various sources for home modifications.
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Education
Advocacy Agencies
- Disability Law Center, Inc.
11 Beacon Street, Suite 925
Boston, MA 02108
617-723-8455
617-227-9464 TTY
800-872-9992
800-381-0577 TTY
Website
E-Mail: mail@dlc-ma.org
Client Assistance Program
- MA Office on Disability
Client Assistance Program
One Ashburn Place, Room 1305
Boston, MA 02108
617.727.7440
617-727-0965 FAX
Website
Contact information
Department of Education
- Special Education Planning and Policy Development Office
Department of Education
350 Main St
Malden, MA 02148-5023
781-338-3375
781-338-3371 FAX
Website
E-Mail: specialeducation@doe.mass.edu
Early Intervention Services (Infant and toddler)
- Early Intervention Services
Dept. of Public Health
250 Washington Street, 4th Floor
Boston, MA 02108
800-905-8437
Website
Contact information
Early Intervention Services (Ages 3 to 5)
- Early Learning Services
Department of Education
350 Main St
Malden, MA 02148-5023
781-338-3300
781-338-3370 FAX
Website
E-Mail: specialeducation@doe.mass.edu
PTI (Parent Training and Information Centers)
- Federation for Children with Special Needs
1135 Tremont Street, Suite 420
Boston, MA 02120-2140
617-236-7210
617-572-2094 FAX
800-331-0688
http://www.fcsn.org/
E-Mail: fcsninfo@fcsn.org
Health & Well-Being
- MassOptions
MassOptions is a service of the Executive Office of Health and Human Services which connects elders, individuals with disabilities and their caregivers with agencies and organizations that can best meet their needs for independent living supports. Trained specialists from MassOptions give you fast, personalized attention. All you need to do is tell them about yourself or what you need to live independently.
1.844.422.6277 (Specialist contact, 7 days 8AM-8PM)
Website - Golden Ridge Opportunities
Golden Opportunities For Independence’s mission is to train and pair highly trained service dogs with people living with disabilities as a means to facilitate confident and independent lifestyles.
Website - Siblings Supports Project
Sibling Supports’ national effort dedicated to life long concerns of brothers and sisters of people with special health concerns. There are 14 “sib shops” (support groups for siblings) located across Massachusetts.
Website - Children’s Medical Security Plan (CMSP)
Provides limited health insurance for uninsured children under age 19 based on family income and size. Some co-pays required.
CMPS information - MassHealth CommonHealth Program
The CommonHealth program provides health care benefits to people with disabilities whose income is too high for to be eligible for MassHealth Standard. Monthly premium is based on an individual’s income.
CommonHealth information (PDF) - Kaileigh Mulligan Program
This program provides health insurance and services to children with disabilities as defined by Social Security Administration or Mass Title XVI, under age 19 who meet Nursing Facility Care criteria and whose family income is too high for MassHealth coverage. Family income is waived and the child’s income and assets are considered for eligibility.
Kaileigh Mulligan Program information
Social Security Administration definition of disability for children - MassHealth Standard/CommonHealth Premium Assistance (MSCPA)
MSCPA provides financial assistance to eligible individuals covered by MassHealth Standard or MassHealth CommonHealth program and are covered by employer and COBRA health insurance.
Federation for Children with Special Needs Brochure (PDF)
800-862-4840 (Information for families covered by MassHealth Standard/CommonHealth) - Massachusetts Health Connector
The Health Connector is a resource for health and dental coverage from the state’s leading insurers. The site offers tools to determine what plans cost savings people may be eligible for.
Website - MassHealth Personal Care Attendant (PCA) Program
The PCA Program is a MassHealth program that helps people with permanent or chronic disabilities keep their independence, stay in the community, and manage their own personal care by providing funds to hire personal care attendants (PCAs). The PCA consumer (the person receiving PCA services) is the employer of the PCA, and is fully responsible for recruiting, hiring, scheduling, training, and, if necessary, firing PCA
Website - Catastrophic Illness in Children Relief Fund (CICRF)
This program helps families bear the excessive financial burdens associated with the care of children with special health care needs and disabilities. CICRF is a payor of last resort. It provides financial assistance for Massachusetts families with children experiencing a medical condition requiring services that are not covered by a private insurer, federal or state assistance, or any other financial source.
CICRF information - Healthier You Wellness Partners
The Healthier You Wellness Partners in Brockton are licensed to administer the AFC program (Adult Foster Care Program). This State funded MassHealth program pays caregivers a monthly stipend for taking care of a friend or family member who is physically or mentally disabled and living in the same household. To qualify for the program, the person being cared for must have MassHealth Standard or MassHealth CommonHealth. They must be 16 years of age or older and be unable to live alone due to a medical, physical, cognitive, or mental health condition. Spouses and legal guardians are not eligible to be paid caregivers, however another caregiver in the household may qualify.
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Contact information
CLINICS
- UMass Memorial Health Care
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Equipment Donation and Loaner Programs
- JB’s Keys
DME Loaner Closet for individuals with DMD and SMA
JB’s Keys loans out Durable Medical Equipment to people living with DMD and Spinal Muscular Atrophy (SMA) in the New England Area at no cost to the individual.
They accept donated used equipment.
Dover, MA
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