Resources

MS Wellness Project is dedicated to providing free resources and information for the MS community.

Organizations that provide programs, services, grants, treatment information, support, and more:

Multiple Sclerosis Association of America: MSAA has three main programs:

1. Cooling, which includes cooling kits featuring products like cooling vests, collars, hats, and pillowcases.
2. MRI Access Fund provides financial support.
3. Equipment Distribution includes wheelchairs, canes, walkers, hospital beds, grab bars, easy-grip dishes and utensils, toilet seat raisers, tools to make dressing easier.

Multiple Sclerosis Foundation:  Offers programs for cooling, computers, and assistive technology. MS Focus provides grants for:

• Emergency Assistance
• Healthcare Assistance
• Home Care Assistance
• Health & Wellness
• Transportation
•  Brighter Tomorrow Grant

National Multiple Sclerosis Society: Connects you with other resources and services to help with the financial challenges of paying for heating, cooling, rent, mortgage, temporary home health aides, transportation, accessibility modifications to homes and automobiles, and durable medical equipment. They also provide free in-home case management.

Can Do MS: Provides free online health and wellness educational programs including interactive webinars to learn skills and tools to adopt healthy lifestyle behaviors.

Financial assistance resources:

Grants and copay assistance programs to help pay for Multiple Sclerosis drugs (and others)

• Pan Foundation
• HealthWell Foundation
• The Assistance Fund 
• Patient Advocate Foundation Co-Pay Relief Program 
• Patient Services Program
• GoodDays  
• Needy Meds
• https://www.rxassist.org/
• https://www.goodrx.com/

Help with Medicare:

• Medicare savings program
• Wheelchair ramp assistance- https://www.payingforseniorcare.com/financial-assistance/wheelchair-ramps-medicare

The National Council on Aging Medicare information:

• https://www.ncoa.org/older-adults/benefits/healthcare/medicare

Personal care assistance program:

• Division of Disability Services/ Personal Assistance Program

Medication assistance and information:

• Ampyra: ampyra.com/cost-patient-assistance
• Aubagio: MSOnetoOne.com
• Avonex: abovems.com
• Betaseron: betaseron.com/betaplus-support-program/financial-support/
• Copaxone: sharedsolutions.com
• Extavia: extavia.com
• Gilenya: gilenya.com/c/ms-pill/go-program
• Acthar: Support & Access Program – actharmsrelapse.com
• MSOne2One: lemtrada.com
• MS LifeLines:mavenclad.com
• Alongside MS: mayzent.com
• Ocrevus: Genentech-Access.com
• Plegridy,Tecfidera,Tysabri & Vumerity: abovems.com
• Rebif: mslifelines.com
• Bafiertam: https://www.bafiertam.com/
• Manufacturer Assistance for MS Disease-Modifying Treatments https://www.nationalmssociety.org/Treating-MS/Medications/Patient-Assistance-Programs#section-1

Search engine for medication assistance:

• https://medicineassistancetool.org/

Local, state, and national resources (US)

• https://www.hhs.gov/programs/index.html  Local and state resources.
• United Way connects people with community resources and programs.
• https://www.211.org/  Put in your zip code to connect with local resources
• https://gatherms.com/nationwide   Connect with national and local services
• https://www.feedingamerica.org/find-your-local-foodbank
• https://www.salvationarmy.org/ihq/health
• https://www.goodwill.org/rising-together/

Social Security Disability Resources:

• Requirements for SSDI: https://www.ssa.gov/benefits/disability/qualify.html
• Apply for Social Security Disability benefits: https://secure.ssa.gov/iClaim/dib
• Checklist to apply for Social Security Disability https://www.ssa.gov/hlp/radr/10/ovw001-checklist.pdf
• Social Security ADL Questionaire- Adult Function Report: https://www.ssa.gov/forms/ssa-3373-bk.pdf
• NMSS Guidebook for people with MS applying for SSDI https://www.nationalmssociety.org/nationalmssociety/media/msnationalfiles/brochures/guidebook-social-security-disability-for-people-with-ms.pdf

Other SSDI information:

Disability evaluation for Multiple Sclerosis: https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm  

The common physical, cognitive and emotional symptoms of MS that can interfere with an adult’s ability to function at work or in school are covered in three separate sections of the Listing: (as per NMSS guidebook)

• Neurological disorders evaluated for SSDI:11.09 Multiple sclerosis, https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm#11_09
• 2.00 – Special Senses and Speech https://www.ssa.gov/disability/professionals/bluebook/2.00-SpecialSensesandSpeech-Adult.htm
• 12.00 Mental Disorders https://www.ssa.gov/disability/professionals/bluebook/12.00-MentalDisorders-Adult.htm

Disability Lawyer serving NJ & PA areas:

• https://www.hobbielaw.com/  Gregg Hobbie has been a trustee for the NMSS and has received an award from the MOCEANS Center for Independent Living for his work as a disability advocate. He provides his clients with personal service and he offers a free initial consultation and case evaluation of your SS claim. 732-766-5682

Other resources:

• Friends of Man  Assistance to people who have genuine needs but can’t find help elsewhere. Provides help to maintain self-sufficiency, as well as assisting with disability and medical needs.
• https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/brochure-Adapting-Financial-Planning-for-a-Life-with-MS.pdf
• https://www.mscenter.org/ Rocky Mountain MS Center provides a comprehensive and integrated wellness approach to MS and related diseases, life-changing support services, and cutting-edge research. .

More ideas:

• https://ncil.org/   To find an independent living center, call your state’s vocational rehabilitation agency. You can also call the National Council on Independent Living.
• https://emilyn.app/home/ Emilyn is an MS app to keep track of symptoms. It has a community button where you can connect with others and a Learn button to read MS-related articles.
• https://www.spoonieday.com/  An app developed by Julie Blackburn, to Track, Plan & Manage your daily energy output (spoons).
• Well Spouse Association for caregivers
• Disability Trading Zone on Facebook. A store that allows its members to Buy, Sell or Trade their items that make lives easier.
• https://curbfreewithcorylee.com/2020/09/12/best-wheelchair-accessible-beaches-in-florida/ Beach wheelchair accessibility in Florida.

UK Resources: 

• https://www.mssociety.org.uk/care-and-support/financial-help/apply-for-an-ms-society-grant Offers two grants: Health and Wellbeing and Carer’s Grant.
• https://www.ms-researchandrelief.org/grants/ Offers financial assistance for aids, adaptions, and equipment.
• https://www.mstrust.org.uk/life-ms/your-finances/grants-and-financial-help Lists a variety of resources to explore.

The links shared in this article are for informational use only. Please verify all resources.

 

Most of the resources listed are in the US. I had difficulty finding resources for other countries. If anyone has other resources to share that are relevant to living with Multiple Sclerosis, please email me: [email protected] .