Policies and Procedures for Third-Party Fundraisers

Policies and Procedures for Third-Party Fundraisers

Thank you for contacting us and for your thoughtful intent to hold a community event or fundraiser in support of Superficial Siderosis Research Alliance (SSRA), a 501(c)(3) tax-exempt, publicly supported organization. In our world it is increasingly difficult for physicians, clinicians, and researchers to pursue much needed life-changing discoveries because of financial and administrative barriers. This is especially true when it comes to a disease as rare as superficial siderosis.

Working in partnership with the Superficial Siderosis Patient Registry and Living With Superficial Siderosis, alliance founders Kyle and Susan Dempsey, have envisioned a true collaborative effort. People affected by superficial siderosis need a safe place to go for up-to-date and understandable medical information to prepare for conversations with their doctors and make the best decisions going forward. The Living With Superficial Siderosis (livingwithss.com) websites purpose is to help visitors find answers to their questions so they can better understand their diagnosis and make decisions with confidence.

Your support allows the SSRA to make new research possible and expand every physicians understanding of superficial siderosis. The end goal is to find a way to facilitate the healing process. 

 Superficial Siderosis Research Alliance Mission:

To seek, raise and provide funding in support of medical research for the benefit of the rare disease community affected by the neurodegenerative disease superficial siderosis and the identified symptoms brought on by this disease such as ataxia, hearing loss, and myelopathy.

 This page contains the following information: 

  • A copy of the Superficial Siderosis Research Alliance Policies and Procedures for third-party fundraising activities. Please review these policies and procedures carefully.
    • Use of Name and Logo 
    • Event Approval 
    • Financial and Legal Information 
  • Third-Party Fundraiser event proposal link. This form should be completed online at our website and submitted as soon as possible. 

Upon submission of your event proposal, the Policies and Procedures become part of your fundraising agreement with SSRA, and you are responsible for complying with them. The SSRA welcomes third-party fundraising events, but we must BE NOTIFIED all events in advance if you plan on using the Superficial Siderosis Research Alliance (SSRA) name or logo for advertising, promotion, solicitation, or in any way before, during, or after your event. The SSRA maintains the right to decline being associated with an event. This ensures we maintain the integrity of our name and reputation, as well as our commitment to donors and responsibilities as a legal 501(c)(3). Thank you for your interest and support! We appreciate your interest in fundraising for SSRA, and we look forward to hearing from you. 

 

Use of Name and Logo 

  1. For purposes of these Policies and Procedures, “you” means the organization, group or individual sponsoring or holding the event. “ssra.livingwithss.com,” “SSRA,” “we,” or “our” mean Superficial Siderosis Research Alliance.
  2. Events should complement the mission, values and image of Superficial Siderosis Research Alliance. Companies, organizations, groups or individuals that conflict with the mission, values and image of Superficial Siderosis Research Alliance may not be sponsors of your event.
  3. Your event cannot state or imply that it is an agent, subsidiary, or partner of SSRA or that it holds any other business relationship with Superficial Siderosis Research Alliance unless there is a written agreement in place.
  4. Publicity for your event may not imply that the event is sponsored or co-sponsored by Superficial Siderosis Research Alliance or that we are involved as anything but the beneficiary. We may only be identified as Superficial Siderosis Research Alliance. For example, you may not call an event “Superficial Siderosis Research Alliance 5K /Fun Walk .” Your event should be promoted as the “5K /Fun Walk to benefit Superficial Siderosis Research Alliance.” 
  5. You may not use the Superficial Siderosis Research Alliance name or logo or otherwise indicate to the public that an event is being held for the benefit of SSRA without the prior consent of an authorized representative of this organization. You may not make public announcements or promote any such event until you receive electronic approval from the organization of your Third-Party Fundraiser proposal. 
  6. Superficial Siderosis Research Alliance  reserves the right to review and approve all promotional materials including, but not limited to, advertising, letters, brochures, flyers, and press releases prior to production or distribution. Proposed materials should be submitted via email to events@ssra.livingwithss.com with the subject line: Event Promotional Materials

Event Proposal 

  1. Event description proposals must be completed and submitted to SSRA via their website no less than two weeks prior to the proposed fundraising event. 
  2. SSRA must be notified via email if there are any significant changes to the event proposal after it has been submitted. In the event such changes are not in line with the SSRA mission or code of ethics you will be directed to remove any references to Superficial Siderosis Research Alliance from the event. If so directed, you agree to release Superficial Siderosis Research Alliance, its officers, directors, and employees from any and all liability in connection with any such action. 
  3. We have made a commitment to our volunteers, board of directors and donors that we do not sell or provide others with our donor , volunteer, or staff electronic or physical mailing lists.
  4.  In order to better coordinate fundraising activities, you will provide us with a list of targeted business, group, or             organizational sponsors for your event. 
  5. SSRA is happy to provide brochures, pamphlets, and other informational materials, promoting and explaining Superficial Siderosis Research Alliance   goals and mission in an electronic format. We do not have printed or prepared materials at this time. We will notify you if this changes.
  6. We reserve the right to send one or more representatives to attend and observe your event free of charge.

Financial and Legal Information 

  1. In order to provide your donors with important information concerning their contribution, we ask that all promotional materials clearly state the percentage of proceeds (from gross or net proceeds) and/or the portion of the ticket price that will benefit Superficial Siderosis Research Alliance. 
  2. You should limit expenses to 50% of the total raised by the event. If event expenses are greater than the money raised, you are responsible for paying those expenses. Superficial Siderosis Research Alliance will not provide funding or reimbursement of any expenses related to your event without prior written approval of the appropriate and authorized representatives.
  3. You may not keep any portion of the proceeds as profit or compensation for organizing the event.
  4. You cannot set up a temporary bank account in the Superficial Siderosis Research Alliance name. Proceeds should be sent to Superficial Siderosis Research Alliance no later than 30 days following the event and should be mailed to Superficial Siderosis Research Alliance, N28 W24389 Single Tree Ct, Pewaukee WI 53072 Attention: Fundraising. 
  5. You are responsible for obtaining all permits and licenses – especially those for raffles or games of chance. Because state and local governments control all charitable gaming activities, if your event includes a bingo, raffle, 50/50 draw, and/or casino-type games and activities, you must acquire the proper permit/ license from your state or local government office and abide by all rules and regulations pertaining to such gaming activity. 
  6. You agree that you will comply with all state and/or municipal charitable solicitations, statutes, and/or ordinances which may apply to your event. 
  7. Events must comply with all applicable federal, state, and local laws, including all laws governing charitable fundraising and gift reporting. All tax-receipting issues and procedures must be agreed upon and documented prior to the event before Superficial Siderosis Research Alliance will agree. SSRA will only issue tax receipts for checks made out to “Superficial Siderosis Research Alliance”. If your donors choose to send their contributions directly to SSRA, you must inform us of the value of any goods or services the donor received in return for the contribution. SSRA will issue tax receipts for in-kind donations if you provide complete information ( names, addresses and contact information ) for all eligible donors.
  8. You agree that you will not use Superficial Siderosis Research Alliance tax exemption in any manner or the promotion of your event, nor will you represent to the public that you enjoy any tax-exempt rights or privileges as a result of your role in the event (unless you have separate tax-exempt status), nor will you state that  any portion of the purchase price for any goods or services at the event is tax deductible for charitable purposes.
  9. It is your responsibility to provide  liability insurance to cover the event if required. Superficial Siderosis Research Alliance will not insure your event.You agree to indemnify and hold Superficial Siderosis Research Alliance and its employees, agents and representatives harmless from and against any and all claims, demands, liabilities, expenses, losses, damages, attorneys’ fees arising from or in connection with the event.
  10. Superficial Siderosis Research Alliance will not assume any legal or financial liability associated with your event, nor will we indemnify you or any party involved in your event for any damage, expense, or other costs arising or in any manner related to your event. Superficial Siderosis Research Alliance and all related entities are not liable for any injuries sustained by event volunteers or participants related to your event and cannot assume any type of liability for your event.

This concludes the Policies and Procedures for Third-Party Fundraisers of the Superficial Siderosis Research Alliance.  We appreciate your understanding and compliance so we may protect our 501(c)(3) status and maintain our public accountability. More importantly, we appreciate your support and hard work. 

Thank You,

Superficial Siderosis Research Alliance