After four years apart, on July 29th, our LRG community began to gather for our biennial Life Fest event. Our Life Fest team of staff & volunteers flew out on Wednesday to prepare for the arrival of our GIST Mentors, the LRG Board, our presenters and our patients and caregivers and family. Originally our New Orleans event had been planned for 2020, but was postponed due to the pandemic.
“After three long years of planning this event, it did not feel real until we arrived in New Orleans. Once at the Hyatt and we saw two members sitting in the lobby it made all of these years of planning worth it,” Jessica Nowak, Director of Outreach & Engagement shared.
Life Fest 2022 was an amazing event filled with inspirational stories, laughter, hugs and tears shared by GISTers, caregivers, mentors, medical professionals, pharmaceutical representatives, staff, board members, and friends. Over 130 people participated throughout the weekend. We are grateful to our Board of Directors and donors who made possible the Life Fest Scholarship Fund again this year. Scholarships were awarded to families who needed help to participate in Life Fest. Almost $7,000 was raised to provide 10 families with support to attend and stay in New Orleans for the weekend conference.
“We are so grateful for our expert speakers and presenters who shared with us not only their knowledge but also their dedication and passion for the GIST community. It is also worth noting that participants noted on their evaluation forms that this was the best Life Fest yet and are looking forward to you joining us at our next one in 2024! Stay tuned for details!” said Diana Nieves, Senior Director of Outreach & Engagement.
Here is a little sampling of the feedback from participants who shared their experience at Life Fest 2022:
It was my first Life Fest but it won’t be my last. I loved everything about it! Loved the GIST specialists with all of their new information and wonderful ideas for treatment. Life Raft staff was wonderful! Helpful and cheerful and well organized! Thanks for all you do! – Margaret McInteer
The thanks belongs to you and the LRG team. You all are a great collection of selfless people who compassionately care for folks that have great need. You listened to Santy’s heart and supported his vision. You treat us mentors like gold and we have learned to have great love for each other. Thank you for each time that you have brought us together. Thank you for caring and sharing part of your life with who Christ called “the least of these”. Much peace – Rob Taylor
Thank you so much for your part in making another Life Fest a wonderful, reassuring and gratifying experience. You Diana and the rest of the Life Raft staff are truly amazing, loyal and dedicated souls who have provided such a wealth of information and education for all GISTer’s and our Caregivers. I feel so fortunate to be within the arms of the LRG guidance.. THANK YOU AND TO ALL THE STAFF! Seeing past fellow GISTer’s and meeting all of you fellow Mentors held special meaning for me. Bless us all and as always, Self Advocate, Self Advocate, Self Advocate! – Jon P. Treder
You can check out past Life Fest celebrations here.
Life Fest 2022 Honorees
Dr. Monica “mOe” Anderson, Mistress of Ceremonies for our awards luncheon, presented The Nikki Morales Courage Award to Patient Advocate MaKayla Evans. Nikki Morales epitomized both bravery and perseverance. She was a true warrior, who faced every challenge with a smile. This award was created to honor patients who inspire others through their determination and courage. Dr. mOe shared, “You fit into this category, Makayla; just like Nikki, you teach others through example to live life to the fullest beyond any obstacles you may face.”
Dr. Breelyn Wilky was presented with our Clinician of the Year Award for outstanding medical professionals who have made an impact on the GIST community. Dr. mOe shared, “Dr. Wilky, you are being honored not only because of your contributions, but because you are personally responsible for increasing patient survival. You have always been a supporter of The Life Raft Group and our efforts to help patients survive and thrive. We truly appreciate you and your passion and dedication, not only to patients and caregivers, but also in your continuing research efforts.”
The GIST Center of Excellence Award was awarded to the Ronald Reagan UCLA Medical Center, accepted by Dr. Arun Singh. “The Center is being honored because of its research contributions, involvement in clinical trials, focus on extraordinary treatment to the GIST community and its multi-disciplinary approach to the well-being of patients and their families. The multidisciplinary team of oncologists, surgeons and nurses go above and beyond to treat the GIST community. We honor these exceptional medical professionals for their informed clinical care, the patients for their strength and courage and the caregivers for their unwavering support, all of whom play an integral role in patient survival,” said Dr. mOe.
Patient Advocate Josalin Dunn accepted an award on behalf of Norman J. Scherzer, retired Executive Director & Founder of the LRG, for his decades of exceptional advocacy. In her tribute to ‘Mr. Norman’, Josalin shared the enormous impact that he had had not only on her own life but on the lives of so many patient and families. “Thank you Mr. Norman, for keeping the ‘music’ going that gives so many of us a reason to dance and celebrate. What are we celebrating? We are celebrating hope; hope that comes as a direct result of all you have done to shine a light on our rare illness. And that light has brought changes that have helped to extend our lives,” Josalin shared.
Current Board PresidentGary Glasser gave a heartfelt tribute to outgoing Board President Jerry Cudzil for the his long, productive tenure with the LRG. Gary praised Jerry’s passion for the LRG as well as his motivation, tenacity, vision, and humility. Jerry would spearhead many fundraisers most notably Night to Fight Cancer which began in 2004 and runs yearly. His strategic vision and problem-solving abilities have guided the LRG though many transitions through his nearly two decades of leadership. As his late father-in-law Bill once said, “My son-in-law is a very giving, dedicated person. He really cares.”
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