The Tissue Donation Project
What if researchers could identify a way to give your body a fighting chance?
Research into superficial siderosis takes time, often longer than many of us would hope. It can be difficult to accept that some members of our community may never see the benefits of this work. Yet, you still have the opportunity to make a lasting impact. Your contribution can help those who follow have a real chance at living a better life.
2025 Updated Enrollment Package Now Available
We’ve made the enrollment forms downloadable PDFs.
Instructions:
- Download the enrollment package using the button below.
- Complete all required sections.
- Keep the original signed copy for your records.
- Email copies back using the instructions listed.
Why This Matters
We are seeking project volunteers willing to make the most generous gift possible, an end-of-life donation of tissue samples from the brain and spinal cord for superficial siderosis research.
It is not an easy thing to contemplate your own mortality. Still, we need at least ten volunteers who will provide consent so that the proper steps can be arranged in advance. With your help, researchers can:
- Improve the understanding of superficial siderosis at the cellular level.
- Uncover how and why functional changes occur in the brain and nervous system.
- Empower future discovery of better treatments and, ultimately, a pathway toward healing.
What to Expect
- No cost to your family: We are committed to raising donations to cover expenses, so your loved ones will not face financial burden.
- Respect and dignity: After the procedure, your body will be released to your family without interfering with funeral or interment plans.
- Oversight: All tissue and records will be stored under the supervision of Dr. Michael Levy and his team at the Superficial Siderosis Research Laboratory, Massachusetts General Hospital.
- Privacy protected: Every effort will be made to safeguard your personal information.
Your next of kin will complete additional steps at the time of your passing, but your decision to enroll now ensures the process can be handled smoothly and respectfully.
You always have a choice. Enrollment is voluntary, and you may opt out at any time.