Swifty Foundation

Mission

Mission: The Swifty Foundation’s mission is to raise funds and awareness for pediatric brain cancer research by supporting:

• Tissue Donation
• Research Collaboration
• Medulloblastoma Research

About

Prior to being diagnosed with medulloblastoma at the age of 10, Michael Gustafson was the fastest kid in his class, took first place in the state gymnastics meet on pommel horse, and was a handstand champion. When headaches and vomiting took us to the ER, we should have known something was terribly wrong when the Dr. said, “Well, he’s not very coordinated.” That’s really when our lives changed forever.

A craniotomy was performed at Comer’s Children’s hospital shortly after that. Michael had six weeks of proton radiation and chemo at Mass General followed by 6 more months of in-patient chemo at Comers.

Michael was in remission for 12 months when the spots returned on his brain and spine. Upon recurrence Michael’s chance of survival fell to 5%. Michael lived for another 4 years receiving more proton radiation to his spine and stereotactic radiosurgeries to mitigate the tumor growth in his brain twice. We tried alternative therapies and tried for compassionate use of a promising oral medication but were stalled until it was too late for the experimental drug to have effect.

Throughout it all Michael went to school, continued his athletic pursuits, excelled in school all while struggling with his potential death. He finally found meaning and purpose in starting his foundation, the Swifty Foundation and in implementing his Master Plan, which was “To donate my body to science so they can use me to find a cure for cancer.”

Michael donated his brain and spine to researchers in Canada and the US. Donating was difficult, neither hospital we were treated at could help us donate his tissue. With the help of KidsVCancer and our dedicated pediatrician, we were finally able to make his dream a reality. Since that time, Michael’s Master Plan became Swifty’s Master Plan.

Swifty’s Goals

1. Increasing the quantity and quality of post-mortem brain tissue donations
2. Working collaboratively with other funders, researchers, health care institutions and families
3. Funding research to improve outcomes for children with recurrent medulloblastoma

Swifty’s Focus Areas

1. To increase the quantity and quality of post-mortem brain tissue donations while improving collaboration, we have focused on three areas:
   1. 90% of families would donate post-mortem tissue if asked, but most are not asked. So we are working on educating families and healthcare providers of the importance of post-mortem brain tumor donation and trainings for doctors in approaching families
   2. Logistics have been a barrier to donation so we have created 5 Regional Centers of Excellence across the country for collecting, storing and sharing post-mortem brain tissue. Each center has a Tissue Navigator to coordinate these complicated donations.
   3. Standardizing post-mortem tissue collection and processing protocols so it can be collected and shared across institutions
   4. Increasing the availability of tissue was not enough due to a lack of collaboration in the field. In the past tissue and the resulting data was not widely shared. Working with CBTN and the Centers of Excellence has allowed greater access and sharing of the tissue now widely being collected.
2. Recurrent Medulloblatoma
   1. Recurrent medulloblastoma has a 5% survival rate, because when it recurs there is no treatment plan.
   2. Recurrent medulloblastoma is different from medulloblastoma because the tumor changes over time… it is a moving target. So Swifty invests in recurrent medullo research.

Swifty supports the brain tumor community

We belong to CAC2 a collaborative network of nonprofits, corporations and individuals from across the US and other countries to advance a variety of childhood cancer causes by unifying these diverse groups’ efforts.

We have spoken at various conferences about the great need for and lack of post-mortem brain tissue.

We have held two family forums to gather family tissue donation stories and create a consensus around best practices for approaching families about donation

We have gathered researchers and pathologists to develop best practices around post-mortem tissue donation.

We have funded brain cancer research with other family foundations.

We highlight the work of other family foundations in our social media and blogs.