Alex Landis Empowerment Fund (ALEF)
ALEF Grant Eligibility
Any adult living with a neuromuscular disability* is eligible to apply for and receive an ALEF Grant.
Individuals are eligible to apply for and receive up to 3 grants totaling no more than $500 altogether. Former grant recipients of past years are eligible to re-apply.
Grants are awarded on a first-come, first-serve basis as long as funds remain available. Individuals experiencing an immediate financial hardship, such that their health, safety and/or ability to independently live in the community is impacted, are strongly encouraged to apply.
Grant requests are subject to approval by NMD United's ALEF Committee. For further information on this program, contact the ALEF Committee at email@example.com.
*Eligible applicants are those who (a) is a member of the Facebook group “Living with M.D,” (b) provides us a letter from a medical professional with a stated neuromuscular diagnosis, OR (c) has previously received an ALEF grant.
History of the ALEF Grant Program
When one of NMD United’s founders, Alex Landis, died suddenly on June 28, 2015, a number of donations were made to our organization in her honor and memory. NMD United wanted to use these donations in the best and most unique way possible. Thus, the Board of Directors established the Alex Landis Empowerment Fund (ALEF), a grant program that helps adults living with neuromuscular disabilities (NMDs) by providing financial relief in various categories of need.
In September 2015 the Alex Landis Empowerment Fund (ALEF) Committee was formed, consisting of a group of community individuals who themselves live with neuromuscular disabilities. The first few meetings evaluated community needs, outlined the grant program, and developed policies and procedures for vetting applications. The ALEF Committee continues to meet every other week for up to 2 hours.
The first grant application was made available June 2016 and covered Personal Care Attendant (PCA) Advertisement Fees. Since then, we've been able to add four additional grant categories and increase the total amount of grant funds awarded each year!
Why is ALEF crucial to our community?
Individuals with disabilities often face financial difficulties, many subsisting on meager government benefits of approximately $733 USD per month and contending with barriers in employment. The ALEF Grant program aims to mitigate this burden.
Public and private health insurance programs frequently deny coverage for medically necessary items such as CMS needed for one's health and hygiene post medical procedures. Consumable medical supplies are items used on a one-time basis for a medical purpose and cannot generally be reused. The list of CMS for which applicants may apply for reimbursement grants includes, among others, urinary or colostomy supplies, medical gloves, facial masks, tracheostomy care trays/kits, and nutritional supplements.
For many people, the upkeep of a personal vehicle can be difficult. Accessible or modified vehicles have additional costs to ensure safety and operability of essential mechanisms, including ramps, automatic doors, wheelchair securement equipment, hand controls and other adaptive or modified elements. The Accessible Vehicle Maintenance and Repair grant will be available to cover costs to a person's primary mode of private transportation that requires maintenance or repair for safe, legal operation. This includes routine or standard maintenance and repair.
Recruiting and hiring personal care attendants (PCA) is the responsibility of many disabled people receiving consumer-directed services or who private pay. The price of advertising job openings and descriptions for these essential services can range from $25 to more than $200 per advertisement, depending upon geographic location and advertisement source. Recipients of this grant will also receive assistance with advertisement writing and peer support during the interview process upon request.
Assistive technologies are often the link between disability and independence. These devices, gadgets, hardwares or softwares are used by a person with a disability to overcome functional limitations. They can make computer use easier or possible for some. They may amplify an individual's speaking voice such that others hear them more loudly, assisting in the participation of group or outside discussions. Assistive technologies are life changing, essential items for the neuromuscular community.
These are just a few of the hidden costs of disability that individuals living on a fixed income or low wages are forced to pay in order to maintain their independence.
Meet the ALEF Committee
ALEF Committee members are volunteer professionals living with a neuromuscular disability themselves. They are responsible for identifying community needs, developing grant policies and procedures, designing applications, and vetting grant recipients. The ALEF Committee meets every other week for up to 2 hours, and as-needed to ensure timely response to applications received.
Kendra Scalia, ALEF Committee Chairperson
Kendra Scalia serves as ALEF Committee Chairperson and also with NMD United's Board of Directors as Secretary. Ms. Scalia is a policy analyst and disability advocate, having earned a Master’s degree in Public Policy (M.P.P.) from the University of California at Berkeley. As the Chair of the ALEF Committee, she has led the team by developing clear and concise committee policies and procedures. She creates Internet-based applications for ALEF grants, which the Board of Directors approves and have previously praised for their ease of use and accessibility. Ms. Scalia works closely with the NMD United Board Treasurer, T.K. Small, for fund distribution to awardees once applications are reviewed and approved by the full ALEF Committee.
"I deeply believe in the mission and vision of NMD United, and want to use my skills as a policy analyst to benefit the disability community. Shortly after joining the committee, I fell in love with grant giving and took the role of Committee Chair. It gives me joy to hear from our members when an ALEF Grant has been able to make a difference in their lives! I envision a long future for the ALEF Grant Program, one that expands our grant categories into realms of disabled life that are often overlooked due to expense and/or social stigma."
Dan Darkow, ALEF Committee Member
Dan Darkow serves as ALEF Committee Member and also with NMD United's Board of Directors. Mr. Darkow is a graduate from Miami University's Student Affairs in Higher Education master's program. He currently works as a Coordinator in the Miller Center for Student Disability Services at Miami University and advises the Students with Disabilities Advisory Council. Dan's primary interest areas are reducing physical and digital access barriers while promoting universal design. In addition to his work in the disability services field, Dan adjuncts for the Disability Studies program where he teaches Introduction to Disability Studies for undergraduate students.
"Being a part of the ALEF Committee brings me so much joy that I have the ability to positively impact the lives of fellow individuals with neuromuscular disabilities. The current ALEF Grant that is available supports such a unique need for those with NMD which other programs do not fund such as covering PCA advertising costs and various out-of-pocket expenses. True to our mission of fostering meaningful interactions and providing informational resources to increase self-direction while promoting independence, the ALEF Grant is just another way our peer-led and peer-driven organization truly supports and changes the lives of our own community members."
Brooklyn Marx, ALEF Committee Member
Brooklyn Marx serves as ALEF Committee Member, on NMD United's Board of Directors, and as NMD United's Web and Social Media Director. Ms. Marx is a graduate from the University of Guelph, and is currently a master's student in Yorkville University's Counselling Psychology program. She is an active volunteer with the local HIV/AIDS Resource and Community Health Medical Clinic, and at a community support network for maternal mental health. Brooklyn is passionate about promoting independence, wellness, accessibility, and health equity at individual and community levels.
"As an ALEF Committee Member, I continue to be amazed at the work that NMD United is doing. Since NMD United is made up of adults living with neuromuscular disabilities, the services offered are meaningful and directly benefit those in our community. ALEF aims to target the financial burden that comes with living with a disability by offering independent living grants to those who need it! Being able to see the positive change that these grants are making in the lives of fellow adults with neuromuscular disabilities is incredible, and fuels my passion for working in this community."
Alana Theriault, ALEF Committee Member
Alana Theriault is a disability benefits advocate who, since 1995, has assisted people with all types of disabilities with federal and state cash and health benefits. Her specialty is assisting those who wish to enter the workforce or maintain employment while navigating Social Security work incentives and Medicaid eligibility requirements. She is passionate maintaining and improving access to long-term community-based personal assistance services, and eliminating policy barriers that require disabled people to be poor to be eligible for independent living supports.
"So many organizations operate under the premise that disability is bad and that disabled people are in need of fixing. NMD United understands and embraces the truth that disability is a normal part of the human condition, and that we disabled people are the best qualified to decide what we need socially, economically, politically, and medically. Serving on the ALEF Committee and providing on-line Benefits Counseling and Attendant Management Workshops are ways that I can help me and my peers improve our quality of life and independence."
Michael Wasser, ALEF Committee Member
Michael Wasser has worked for the New York City Law Department as Assistant Corporation Counsel for over seventeen years, and serves on his office’s Diversity Committee for Attorney Recruitment and Retention. When he’s not working, he volunteers his free time to promoting NMD United’s mission and serving on the ALEF Committee. As a committee member, he assists the team with implementation of ALEF grants, and reviews committee policies and procedures to make sure grant funding is maximized most efficiently.
"I volunteer for NMD United, because we are the only peer founded, managed, and run not-for-profit organization serving the needs of adults living with neuromuscular disabilities. While there are several well-known not-for-profits involved with the neuromuscular disability community, they are focused on research, treatments, and cures. This limits their ability to focus on those living with neuromuscular disabilities, and enabling us to live independently."
Emily Wolinsky, ALEF Committee Member
Emily Wolinsky is President of NMD United and also serves as the organization's Executive Director of Outreach and Education. Ms. Wolinsky holds a master’s degree in Educational Leadership and Administration and Counseling from Prairie View A&M University. As a member of the ALEF Committee, she has promoted grant opportunities to over 1,300 adults with neuromuscular disabilities through her network. Ms. Wolinsky reviews and consults with committee members as they work to develop policies and procedures for the ALEF Grant program.
"Alex Landis and I became very close while building the foundation of NMD United. This organization was her 'baby' and Alex wanted more than anything to see NMD United help thousands of adults reach their goals of independence. She would be so excited to know that ALEF grants are helping our peers in unique ways that other organizations serving adults with neuromuscular disabilities are not. Serving on the ALEF Committee brings me great joy because it gives me an opportunity to celebrate Alex's legacy on a daily basis and honor my friend."
Kareen Zeitounzian, ALEF Committee Member
Kareen Zeitounzian is a Senior Associate Attorney in the Business and Commercial Litigation Practice of Harris Beach PLLC in Rochester, New York. She specializes in matters related to contracts. Her expertise in this area has benefited NMD United and the ALEF Committee over the last two years, as the Committee develops and institutes grants. As a committee member, she evaluates applications with the team, develops application language, and promotes the mission of NMD United’s various projects.
"The fact that our grant program is entirely designed and run by individuals who know first hand how to independently live, work and play with a neuromuscular disability (NMD) is an important ingredient in ALEF’s success. We also devote considerable effort to poll and gather data from the NMD community. With our collective expertise and research findings, our committee is readily able to identify ways to ease the financial burden of life with a NMD on adults within our community, and thereby promote their independence."
Alex's Capes & Tiaras 5k
The Alex's Capes & Tiaras 5K is an annual fundraiser to honor the life and legacy of Alex Landis. Each August in St. Augustine, Florida, Alex Landis is remembered for the great acts she did serving others during her time on Earth. Individuals are able to participate in this event virtually or from any location!
Proceeds from this run benefit NMD United's Alex Landis Empowerment Fund (ALEF) Grant.
Video of Alex's Capes & Tiaras 5K
August 20, 2016 - St. Augustine, FL