ALS Resources & General Support Links

​The following offer a list of helpful websites and other useful resources.  
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Click on any category to learn more.
Disclaimer: The listing of any agency or service is provided for information only.

The National ALS Registry

The National ALS Registry was created by a congressional mandate for persons in the U.S. with ALS. It is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes. No one knows for sure what causes ALS and currently there is no cure. If you have the disease, consider joining the Registry and completing the brief risk-factor surveys because your answers could help scientists defeat ALS.

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Caregiving Support & Resources

MDA
A health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research.

NEXT STEP IN CARE
Provides easy-to-use guides to help family caregivers and healthcare providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.

PATIENTS LIKE ME
Making healthcare better for everyone through sharing, support and research.
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WESTCHESTER JCS
Strengthens communities by helping people of all ages and backgrounds overcome emotional, cognitive, physical and social challenges.

LOTSA HELPING HANDS
Easily organize meals and help for family and friends in need.

CARING BRIDGE
To amplify the love, hope and compassion in the world, making each health journey easier.

MEAL TRAIN
Organize meals for a friend or loved one.

SHARE THE CARE
Provides information and resources for caregivers.

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Accessibility - Travel  

Technical Assistance - Medical Alert

NUMOTION
Mission committed to serving the lifelong needs of our customers through individualized health and mobility solutions.

BUSSANI MOBILITY
Dedicated to helping you get mobile.

DYNOVOX
Because everyone deserves a voice.
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MEDICAL ALERT
Help when and where you need it.

Abilities Unlimited
We offer a wide selection of quality new and used wheelchair accessible vehicles designed to accommodate your individual needs.

101 Mobility
Mobility limitations can lead to difficulties living at home. Whether you are a senior who is finding certain daily tasks challenging or someone with an injury, disability, or illness, there are quite a few solutions available to you.

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Personal Fundraising

GO FUND ME
GoFundMe personal online fundraising websites are perfect for individuals, groups & organizations!

YOU CARING
YouCaring is a free crowdfunding platform that empowers people to help others overcome hardships and enjoy happier, healthier lives.

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Resources for children
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​whose parents have ALS

Scholarship Information and Camps for children

Hope Loves Company
Is unique in its dedication to supporting the children of ALS patients and relatives.  HLC provides emotional and educational support to children who have family member battling ALS

Merfeld Family Foundation Scholarship
Graduating high school seniors from high schools in the United States intending to enroll full-time in an accredited community college or 4-year college or university OR students who are currently enrolled full-time at an accredited 4-year college or university. Candidates must be from a family where a parent was diagnosed with ALS while the applicant was/is in high school or in college.
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Friends of Pam
Scholarship Program
As a tribute to Pam, who lived with ALS from 2006 until her death in February of 2012, Healin' Wheels LLC established the Friends of Pam Scholarship Fund to assist dependents and primary caregivers of ALS patients who plan to continue their education in college.

The Jane Calmes ALS Scholarship Fund
The purpose of the scholarship fund is to provide financial assistance to students pursuing an accredited college degree or vocational certificate, and whose ability to cover the costs is severely compromised as a result of their family’s financial burden of ALS.

ALS Ride For Life​

ALS Ride For Life, a Long Island based not-for-profit patient-driven charity, has available annual scholarships for a graduating senior(s) who has had an ALS family member. This scholarship is funded by the philanthropic participation of Long Island educators, Long Island Teacher Unions, and generous business organizations. 

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Veterans

Those who have served in the military, our heroes, are twice as likely to develop ALS compared to those who have not served.
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The VA offers a full range of health care benefits, including: Prescriptions, Medical supplies, Prosthetic items,Home improvement and structural alteration grant (HISA).

Visit the ALSA site designed specifically for veterans with ALS to learn about what benefits are available and how to apply.
 
Veterans Benefits Administration
 
Automobile Grant Information
Financial assistance is available to purchase a new or used automobile to accommodate a disability for a veteran or service member with certain disabilities that resulted from an injury or disease incurred or aggravated during activity military service. 

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Assisted Living & Medicare

Assisted Living Directory
Assisted Living Directory strives to be the model of honesty and transparency in the assisted living and senior care industry by providing accurate and highly trustworthy facility information, caregiver support, and in-depth, original content, videos, and interviews.

Medicare Interactive
This site helps answer questions about Medicare benefits, rights, and options.

​Center for Medicare Advocacy
Easy access to understanding Medicare.

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Nutrition

​Nutrition Information from the MDA
Studies suggest a significantly improved survival with early, aggressive nutritional management. While consuming adequate protein, vitamins and minerals is important for people with ALS, the most important dietary factor is the consumption of adequate calories. This prevents deterioration due to poor nutrition. 
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The Oley Foundation
Striving to enrich the lives of those living with home intravenous nutrition and tube   feeding through education, advocacy, and networking.

Liquid Hope
The worlds first shelf stable organic whole foods feeding tube formula and oral meal replacement.
 
Thick It
Convenient ready-to-drink beverages and thickeners

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