FALL 2018 NEWSLETTER
 
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Past Events                           Important News   
South Florida Craft Beer Run
September 15, 2018
A big thank you to everyone who came out to Rock Sarcoma Out at the Open Stage Club in Coral Gables, FL in support of the SebastianStrong Foundation & the Manny Alvarez Foundation. The funds you helped raise will go towards research to improve outcomes for childhood cancer patients. Thank you to ALL the amazing bands who came out & shared their talents, & CCNN for producing this great video. Check it out HERE.
Kendra Scott Gives Back Jewelry Event
September 29, 2018 
Congratulations to Gregory Mesa (Christopher Columbus High School) and Nicolas Sosa (Belen Jesuit Preparatory School) for being the first recipients of the SebastianStrong Science & Technology Scholarship. These young men exhibit strong leadership skills, a desire to serve others, and are pursuing degrees in the medical field.
   
Childhood Cancer Awareness Month 
September 2018 
On the morning of June 9th, Oscar Ortiz, Executive Director of the SebastianStrong Foundation & Sebastian's Father, set off on a 160-mile, 7-day journey by sea to raise awareness & critically needed funding for childhood cancer research. Alongside 15 other kayakers, he faced thunderstorms, strong currents, wind, waves, and a scorching sun. While the journey produced blisters, sunburns, and aching muscles, there were also shared smiles, stories, and tears, as these amazing men & women spoke of the loved ones they paddled for. Every year the Castaways Against Cancer kayak for a cure and to honor those who have fought the fight. For the second year in a row, SebastianStrong Foundation has teamed up with the Castaways to expand their fundraising efforts to include a greater focus on childhood cancer specifically.
 
Thank you to all who supported this campaign. For those who didn't have the opportunity - it's not too late to help us reach our $75,000 goal.
 
Want to see a quick recap of the journey? Click HERE.
  
 SAVE THE DATE
November 9, 2019
3rd Annual Childhood Cancer Awareness Weekend
5K Run/Walk & Gala
 About SebastianStrong Foundation
Based in Miami, Florida, SebastianStrong Foundation is a registered 501(c)(3) charity that honors the life of Sebastian “Sebs” Ortiz (2000-2016) by increasing awareness of childhood cancer and raising money to fund research for less toxic, more targeted childhood cancer cures. This mission was born from the example of STRENGTH set forth by Sebs during his courageous 14-month battle with rhabdomyosarcoma. Since his passing, the Foundation bearing his name has bolstered the support of donors from across the country and raised over $400,000 in its first year. SebastianStrong has awarded four grants to date for pediatric cancer research. Additionally, in order to further its mission of increasing awareness, this year SebastianStrong provided scholarships to talented high school seniors pursuing STEM careers. For more information on SebastianStrong Foundation, visit www.SebastianStrong.org.
 2018 SebastianStrong 5K & Gala
SebastianStrong Foundation’s grant of $100,000 to Sylvester Cancer Center at University of Miami will fund a trial to test the efficacy and safety of adding a drug called Disulfiram to existing chemotherapies in an attempt to overcome the resistance to chemotherapy seen in sarcomas (cancers that occur in connective tissues and bones). Pediatric sarcomas are notoriously fatal because, while current chemotherapy can kill the majority of sarcoma cells, some cancer cells often survive chemo and give rise to new cancers (relapses) or spread throughout the body (metastasis). Metastasis and relapses are the major cause of death from pediatric bone and muscle tumors.  Current chemotherapies are 20, even 40+ years old, so attempts to make them work better and be less toxic are important while other cures are being discovered.
 
Why Disulfiram? Sarcoma cells that survive chemotherapy sometimes express high levels of an enzyme called Aldehyde Dehydrogenase (ALDH) and have high potential to cause relapses and metastasis and they have proven to be resistant to existing chemotherapy. The drug Disulfiram, used safely for over 50 years in the treatment of alcoholism, blocks ALDH and laboratory tests have shown that Disulfiram makes sarcoma cells more sensitive to chemotherapy, offering the potential for cures that are more reliable and less toxic to children with sarcomas. Chemotherapy will be around for a long time and SebastianStrong feels that it is important to help researchers quickly find ways to use lower doses of chemotherapy, make them more effective, and less toxic to children. If successful, the hope is that this trial, being directed by Dr. Matteo Trucco, Assistant Professor of Clinical Pediatrics at the University of Miami, will one day lead to dropping some of the drugs being used today, at least reducing their dosages.
 
For questions, please contact James McAllister, Chairman of the Medical Advisory Board and member of the SebastianStrong Board of Directors:   jim@sebastianstrong.org.
 
Introducing the Newest Member of our Medical Advisory Board
The Foundation’s Board of Directors established a Medical Advisory Board to be composed of reputable cancer researchers who are physicians treating pediatric cancer. Facilitating the MAB’s objectives is Jim McAllister of Asheville, NC, who also serves on the Foundation’s Board. Jim brings his 35+ years of corporate management experience to help make certain that every dollar donated to SebastianStrong is used to increase awareness and find less toxic, more targeted cures for childhood cancers. Please direct questions to him at jim@sebastianstrong.org.
 
 Dr. Ginna Priola
Mission Hospital’s Dr. Ginna Priola has joined the SebastianStrong Foundation’s Medical Advisory Board. In this role, Dr. Priola will help educate the Foundation’s Board of Directors and take part in finding and evaluating pediatric cancer research proposals. “Having Dr. Ginna Priola, and her expertise, guiding which research projects to fund is a huge asset for SebastianStrong,” said Asheville resident, James McAllister, Chair of the Medical Advisory Board and member of the SebastianStrong Foundation Board of Directors. “She joins several other prominent pediatric cancer researchers in promoting our mission of finding less toxic, more targeted cures for the cancers that take innocent children from us every day. The fact that our federal tax dollars designated for cancer research only direct 4% toward children’s cancers is disgraceful and Dr. Priola joins many others in raising awareness to this urgent cause.”
Dr. Priola is a Clinical Pediatric Hematologist/Oncologist and Director of the Pediatric Sickle Cell Program at Mission Children’s Hospital and SECU Cancer Center in Asheville, NC. Dr. Priola completed her undergraduate training at the University of Virginia with a B.A. in Biology. She graduated from Eastern Virginia Medical School and went on to complete a pediatric internship and residency at Rainbow Babies and Children’s Hospital/Case Western Reserve University. She remained at Rainbow Babies and Children’s Hospital for an additional year to serve as chief resident.
Dr. Priola completed her pediatric hematology/oncology training at the University of North Carolina at Chapel Hill where her research focused on studying the proteomics of cerebral spinal fluid after the administration of PEG asparaginase in patients with acute lymphoblastic leukemia (ALL). Her research was later published in Pediatric Blood and Cancer. Following the completion of her fellowship, she was recruited by Texas Children’s Hospital/Baylor College of Medicine to serve on their clinical faculty. During her two years at Texas Children’s, Dr. Priola was dedicated to providing excellent clinical care to patients and families as well as working closely with residents and fellows to further their education in pediatric hematology/oncology.
Currently, Dr. Priola practices clinical pediatric hematology/oncology, servicing the population of western North Carolina. Her practice is a member of the Children’s Oncology Group and she participates in numerous clinical trials focused of furthering the development of new and better ways of treating children with cancer while minimizing the lifelong toxicities of treatment. She holds an adjunct appointment of Assistant Professor at the University of North Carolina School of Medicine – Asheville and is actively involved teaching medical students, residents and nursing staff about pediatric oncology and recent advancements in the field. She is also passionate about spreading awareness about childhood cancer throughout the local and regional area.

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Address postal inquiries to:
SebastianStrong Foundation
P.O. BOX 661156
Miami Springs, FL 33266

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