Helping Hand for KAND is a medical equipment assistance program that enhances the ability of KAND patients to navigate life more safely, comfortably, and independently.

Equipment deemed medically necessary should never be inaccessible for our friends diagnosed with KIF1A Associated Neurological Disorder (KAND). Helping Hand for KAND is a medical equipment assistance program designed to assist KAND patients in securing medically necessary equipment while reducing financial stress on families. Thanks to a generous donation made directly to support the creation of this much needed program, KIF1A.ORG can provide additional support and extend a helping hand to those diagnosed with KIF1A Associated Neurological Disorder.

Program Details

Helping Hand for KAND provides financial assistance to families impacted by KAND in order to receive medical equipment not covered through insurance or other programs but deemed medically necessary for the patient.

Equipment Covered

  • Mobility (canes, crutches, wheelchair, gait trainer, medical stroller, standing aids, etc.)
  • Medical (feeding pumps, cooling vests and mattresses, seizure helmets, orthotics, feeding, seizure alert devices)
  • Positioning (mats, wedges, medical recliners, stair systems, hoist systems, etc.)
  • Safety (special needs car seats, feeding chairs, bath chairs, floor sitters, etc.)
  • Speech communication devices/software
  • Other medically necessary assistive devices

Eligibility

  1. Patients must have a diagnosis of KIF1A Associated Neurological Disorder (also known as KIF1A-related disorder, SPG30, NESCAV, and other similarly used terms) or a confirmed pathogenic KIF1A variant, as documented on a genetic report.
  2. Patients must have a letter of medical necessity from one of the patient’s primary or specialty medical professionals.
  3. Patient’s insurance must be utilized first, and when applicable, must show insurance denied coverage of equipment, or only a portion of the expense was covered.
  4. In unique circumstances, KIF1A.ORG may evaluate eligibility of applicants and amount of financial assistance on a case-by-case basis.
  5. KIF1A.ORG may make additional requests as needed to confirm the legitimacy of the request.

Program Details

  1. The maximum assistance for 2022 is $1,000 USD per patient. KIF1A.ORG will accept more than one application per patient as long as the total assistance provided is under $1,000 USD.
  2. Funds are first-come, first-served to those who qualify. Patients will be added to a waitlist if funds become available.
  3. KIF1A.ORG will determine the most appropriate means of payment depending on each case (e.g. direct payment to vendor vs. direct payment to family).
  4. If the cost of eligible equipment is more than the maximum assistance, KIF1A.ORG will apply the funds towards the final payment.
  5. Funds do not cover housing/food assistance, therapy costs, medication, medical appointment or procedure bills, service animals, wheelchair accessible vehicles and/or modifications, or respite assistance. 

Application Process

  1. The application must be completed and submitted online with all required documents.
  2. The submission must include the completed application form, genetic report, letter of medical necessity, denial letter from insurance provider when applicable, and any other necessary information to determine eligibility.
  3. Review of the application may take up to 45 days. Once eligibility is determined, or if more information is needed, KIF1A.ORG will email the applicant.
  4. Applications will be evaluated by the Review Committee and approved or denied based on eligibility requirements above. All applicants will receive an email stating approval or denial of their application.

All submitted information is kept confidential. KIF1A.ORG reserves the right to amend the program guidelines, eligibility, and procedures at its sole and absolute discretion. KIF1A.ORG is unable to make recommendations as to the appropriateness or safety of a particular piece of equipment for patients with KAND. KIF1A.ORG is not responsible for the safety and proper use of equipment. Recipients of medical equipment should consult with medical professionals regarding the equipment. KIF1A.ORG carries no warranty on equipment. KIF1A.ORG or the sponsor of this program is not liable in the event of malfunction or injury as a result of the equipment. It is the sole responsibility of the recipient or their caregiver/guardian to maintain and repair equipment. Before payment is made, the recipient must sign and return an agreement acknowledging the terms and conditions of participating in the program. KIF1A.ORG is not responsible for any cost associated with the equipment such as installation, delivery, labor, disposal, etc. that was not approved in the original agreement. Applicants must be able to coordinate delivery with equipment vendors/suppliers. This assistance program is currently a pilot. At any time, this pilot program and funding may no longer be available. In the event the equipment is outgrown or no longer needed, and the equipment was not created specifically for the individual (e.g. orthotics), KIF1A.ORG recommends donating to a local equipment exchange program.

If you have any questions related to the application process, please contact Charlotte Klinepeter, Administrative Manager, at charlotte@kif1a.org.


Application Form

The KIF1A.ORG’s Helping Hand for KAND medical equipment assistance program enhances the ability of KAND patients to navigate life more safely, comfortably, and independently. Please complete the application fully before submitting to KIF1A.ORG. The submission must include the completed application form and the following attached documents: 1. copy of genetic report with KIF1A variant findings, 2. letter of medical necessity from one of the patient's primary or specialty medical professionals, 3. if applicable, denial letter from insurance provider, 4. and any other necessary information to determine eligibility. If you have technical difficulty attaching the required documents to this form, please email all required documents to charlotte@kif1a.org.

"*" indicates required fields

Name of person submitting this form*
Name of KAND patient*
Please enter a number from 0 to 100.
KAND patient's address*
Does the KAND patient have a confirmed diagnosis of KIF1A Associated Neurological Disorder (also known as KIF1A-related disorder, SPG30, NESCAV, and other similarly used terms) or a confirmed pathogenic KIF1A variant, as documented on a genetic report?*
No more than 750 characters
Max. file size: 10 MB.
Max. file size: 10 MB.
Max. file size: 10 MB.
Drop files here or
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    All information provided in this application is true and accurate to the best of your knowledge. By submitting this application, you understand some additional information may be requested by KIF1A.ORG to determine eligibility. Please acknowledge your consent to be contacted by someone from KIF1A.ORG.*