Ehlers Danlos Syndrome (EDS) Charitable Fund

FUND ESTABLISHMENT:

This Restricted Fund, established by Bill and Carol Simpson, aims to assist financially struggling families with a child or family member affected by EDS (Ehlers-Danlos Syndrome). Charitable Ventures will oversee fund distribution and the application process, with a committee responsible for approving disbursements.

ABOUT EHLERS-DANLOS SYNDROME:

EDS is a rare group of inherited disorders that affects connective tissues — primarily skin, joints and blood vessel walls.

There are several types of EDS that may share some symptoms. These include:

  • an increased range of joint movement
  • stretchy skin
  • fragile skin that breaks or bruises easily

EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.

There’s no specific treatment for EDS, but it’s possible to manage many of the symptoms with support and advice. People with EDS may also benefit from support from many healthcare professionals. Note, this fund is not offering medical advice of any kind. Please see a medical professional if you have questions regarding EDS.

FUND DESCRIPTION:

Healthcare expenses to manage this Syndrome can be overwhelming for many families due to the number and variety of medical needs. Many families cannot afford all the attention needed to provide the best quality care. This fund has been established to help provide some financial relief to qualified families/individuals that meet the eligibility criteria for financial support.

All funding will be paid as unrestricted payments to individuals that meet the established eligibility criteria, until the funding sources have been exhausted.

ELIGIBILITY:

  • Applicant must have a medical diagnosis of EDS.
  • Income of candidates must not be more than $50,000 per year for an individual or greater than $70,000 a year for couples or families.

GENERAL INFORMATION:

  • There will be a one-time grant of up to $2,000 per applicant, depending on fund availability.
  • Applicants receiving Social Security Disability Income may receive two payments of up to $1,000 each. The applicant will acknowledge responsibility for recognizing how this may (or may not) affect their Social Security Income.
  • Distribution of grant awards will take place monthly.
  • Grants are taxable. The awardee will receive a Form 1099 from Charitable Ventures by January 31, 2025.

REQUIRED DOCUMENTS:

  • Completed application
  • Signed Form W-9 (learn more)
  • Full 2022 Federal Tax Returns

INSTRUCTIONS AND PROCESS:

Step One: Application

Applicant must complete the application in full, including uploading all the requested documentation. Charitable Ventures will ensure that the application and documentation are accurate and complete. Please ensure that your Form W-9 is signed.

Step Two: Verification and Notice

The Fund Review Committee (managed by Charitable Ventures) will review the application to confirm eligibility and appropriate documentation support prior to approving payments. Distribution decisions will be made monthly.

Step Three: Fund Distribution

Once approved by the committee, applicants will receive communication of the payment amount. As noted above, Applicants receiving Social Security Disability Income may receive two payments of up to $1,000 each. The applicant will acknowledge responsibility for recognizing how this may (or may not) affect their Social Security Income.

Funding will be received via check or ACH payment, as determined by the applicant.

APPLICATION PROCESS:

If you have any questions about the application, please call Charitable Ventures at 714-576-6630 x111 (8 am – 5 pm, Monday – Friday, except holidays) or email EDSFund@charitableventuresoc.org.

APPLICATION:

ABOUT US:

The EDS Charitable Fund is a fiscally sponsored Fund of Charitable Ventures, a 501(c)(3) nonprofit organization. (Federal Tax ID# 20-8756660) Charitable Ventures will serve as the administrator of this Fund. Charitable Ventures is a regional incubator and capacity builder, fostering innovative work in the region to strengthen our communities. Please review our website for further details and information.