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Donor, Gift, and Fundraising Policy

Shwachman-Diamond Syndrome Alliance DONOR CONFIDENTIALITY, 


Last Revised: July 2021

Thank you for your interest in supporting the mission of the Shwachman-Diamond Syndrome Alliance, Inc., a 501(c)(3) nonprofit organization dedicated to driving research for therapies and cures for Shwachman-Diamond Syndrome (SDS). Our work critically depends on the generosity of people and families like you, and we are grateful to have you as part of our community. These policies apply to donations and gifts made to the Shwachman-Diamond Syndrome Alliance (“SDS Alliance,” “SDSA” “we,” “us” or “our“) directly or through a third party, or via fundraisers & events run by third parties. 

Donor Confidentiality


This policy has been established to ensure the confidential treatment of donor information. All information concerning donors or prospective donors, including their names, addresses, and telephone numbers, shall be kept strictly confidential by the SDSA, its board, staff, and volunteers unless permission is obtained from donors to release such information. This includes donations received by all means (online and offline). The SDSA will not trade, share or sell a donor’s personal information without explicit consent from the donor. Additionally, the SDSA will not send donor mailings on behalf of other organizations.

  1. Confidentiality

    Except for the provisions regarding disclosure of donations in this policy, SDSA employees shall keep confidential the names of donors and personal information about such donors, shall not confirm whether or not a particular individual or organization has donated funds, and shall keep confidential the amount donated. 


  2. Donations in Honor of an SDS Patient or Family

    If a donor makes a donation in honor of or in memory of a specific SDS  patient, the SDSA shall notify that patient or his/her family of the name of the donor and may provide the donor's address so that the SDS family may thank the donor. Additionally, if a donation is made to the SDSA in an envelope with the name of the SDS family written on the address line or if it is clear by some other notation or action of the donor that he or she believes that the SDS family shall be made aware of the amount of the donation, the SDSA shall reveal to the soliciting SDS family the amount of the donation. Similarly, if a donation to the SDSA is made directly to an SDS family with a request to forward a check written to the SDSA, the SDS family shall obviously be aware of the amount of the donation.


  3. Anonymous Donations

    The SDSA shall keep confidential the identity of a donor who requests anonymity except to the extent that the SDS Alliance is legally required to reveal the identity of the donor.  

Gift Acceptance Policy


The SDS Alliance is currently able to accept monetary gifts via cash, checks, credit card, ACH, and wire, as well as stock and IRA charitable giving. We are not able to accept unusual items that require staff time or special expertise to monetize. For other types of gifts, please reach out to the SDSA at as needed.  

Third-Party Fundraising Events Policy


“Third-Party Events”, is defined as any fundraising activity conducted by a group or individual that is not employed by the SDS Alliance, where SDS Alliance has no fiduciary responsibility and little or no staff involvement in its execution. These policies apply to all events or activities benefiting SDS Alliance that are organized and executed by third parties, including family or peer-to-peer (P2P) fundraisers (e.g. community fundraisers organized by SDS families).


Organizer Responsibilities

  • All expenses are the responsibility of the event organizer. SDSA is not responsible for any expenses incurred for a third-party fundraising activity, and will not advance funds or reimburse expenses unless approved in advance by the Board of Directors. We recommend finding event sponsors or charging a registration fee to help cover expenses. You may not purchase goods or services under SDSA’s name, and SDSA’s sales tax-exemption (on purchase) cannot be extended to any third-party event of fundraising effort. 

  • The event organizer is responsible for the planning and execution of the event including safety precautions and adherence to applicable laws. As the beneficiary of a fundraising event, SDSA does not accept or assume any liability associated with the event, including, but not limited to, any injuries sustained by event volunteers or participants during the event. The event organizer will indemnify, defend, and hold harmless SDSA, its directors, officers, and employees from any and all claims that may arise out of or relate to such event. 

  • The event organizer is responsible for obtaining all applicable permits or licenses, including, but not limited to, alcohol, solicitation, and sales tax licenses. 


Promotion and Publicity

  • All third-party events must be publicized and conducted in a manner that makes it clear that SDSA is the beneficiary, not the sponsor or host of the event. 

  • Promotional materials must clearly state that the event is raising funds that will benefit SDSA (e.g. “proceeds benefit Shwachman-Diamond Syndrome Alliance”) 

  • Event names may not incorporate the name of SDSA, as in “The SDS Alliance Walk-a-thon.” SDSA’s name may be used in a second clause identifying the relationship of the event with SDSA, such as “Jane Doe Walk-a-thon, benefitting SDSA.” 

  • All event materials that include SDSA’s logo, including, but not limited to, advertising, press releases, posters, flyers, t-shirts, and public service announcements, must be reviewed and approved by SDSA prior to distribution. 

  • Views and opinions held and expressed by the organizers are theirs only, and don’t necessarily reflect the views and opinions on SDSA. SDSA’s role as the beneficiary of third-party fundraisers does not constitute an endorsement of those views and opinions.


Financial Policies

  • The event organizer may not keep any portion of the proceeds (beyond real expenses) as profit or compensation.

  • The event organizer may not set up a temporary bank account in SDSA’s name, as this is illegal.

  • Donors must be informed that the tax deductible amount of a donation is only the amount that is over and above the value of any goods or services received in exchange for the donation. For example, if a participant pays $200 to participate in a golf outing, and the value of the outing is $50, the donation amount is $150. If a donor pays less than the value of an item, then they will not receive a tax deduction. 

  • If goods are sold to raise money as part of a fundraising event, it must be made clear to the event participants what percentage of the sale price benefits SDSA.


Third-Party Fundraising - Frequently Asked Questions

  • Can I use the SDSA’s tax exemption number?  Because SDSA is not hosting your event, it is considered a third-party event. For this reason, you will not be able to use SDSA’s IRS 501(c)(3) charitable classification, federal tax ID number or tax-exempt certificate. However, you may use the tax ID number for donation purposes only. Please email

  • Can you help me get a permit for my event? The organization and execution of the event is the responsibility of its event organizer. You must obtain all necessary permits or licenses. 

  • Who will provide insurance for my event? The SDSA cannot provide insurance for third-party events. The event organizer is responsible for obtaining insurance for the event, if needed. 

  • What can I give people who made donations for tax purposes? Third-party event organizers cannot use the SDSA’s tax exemption status in conjunction with the event. For donations made directly to SDSA - either by cash, check, or electronically through the SDSA donation and fundraising platform -  donors automatically receive a receipt for tax-deduction purposes. SDSA can provide an authorization letter confirming the organizer’s intent to raise funds for SDSA. In addition, we will send an acknowledgement letter. 

  • Will each of my donors get a receipt? If you provide name and address, or email address along with the donation, for donors or sponsors, the SDSA will send them a personal thank you from the SDSA, which will serve as a receipt. 

  • Can someone from the SDSA attend or help me plan our event? Because of the small number of staff and highly focused approach, staff members are generally unable to attend and plan third-party events. We are happy to provide guidance for your event, but we do not have the staff to handle the organizational and administrative tasks associated with third-party events at this time.

  • What can you provide to help make a third-party fundraiser a success?

    • Consultation on fundraisers and events – we can help you brainstorm ideas and put you in touch with anyone who may have already organized an event like the one you’re planning

    • Approved use of our logo, when appropriate

    • SDSA branded literature and wristbands 

    • A letter of authorization to validate the authenticity of the event and its organizers 

    • Help with writing letters, emails, press releases, flyers, and other promotional material, as staff time allows 

    • Your own personalized fundraising page (see details on the SDSA website)

    • Regular reports of the donors who give to SDSA through your fundraising efforts 

  • What is the SDSA unable to provide?

    • Insurance or liability coverage 

    • Mailing list of donors and/or vendors 

    • SDSA stationery/letterhead

    • Funding or reimbursement of your expenses 

    • Celebrities or professional athletes for your event

    • Publicity (e.g. newspaper, radio, television) 

    • Guaranteed attendance of SDSA staff


If you have any questions about these policies, please contact us at

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