In 2005, Jeanne Whiting and Marlene Portnoy founded The Desmoid Tumor Research Foundation to facilitate and fund desmoid tumor research and support patients with access to information. Jeanne’s personal journey with a retroperitoneal desmoid tumor involved resection, recurrence, 2 1/2 years of treatments including targeted therapy and chemotherapy, and eventual loss of her right kidney. She is keenly aware of the needs of the desmoid community, and has been dedicated to accelerating the search for a cure for the past 18 years..
Prior to co-founding DTRF, Jeanne spent most of her career as an attorney. After attending University of Michigan Law School and J. Reuben Clark Law School, she received a Juris Doctor degree, magna cum laude, in 1980. She then clerked for the Michigan Court of Appeals in Detroit, Michigan, and in succeeding years practiced with Sidley & Austin in Cairo, Egypt and in Washington, D.C.; with Shearman & Sterling in New York, New York; with Stern, Dubrow & Marcus in Maplewood, NJ; and, as a sole practitioner.
After retiring from the practice of law to raise her family, Jeanne became involved in various nonprofit organizations, including serving as Northeast Director for Choice Humanitarian (1997-1998) and Executive Director of FamilyCares (2000). She feels that getting a desmoid tumor was both a wake-up call and a calling to a new endeavor as it became clear to her as a patient that this was a field that needed jumpstarting into a new level of accelerated research to develop new treatments.
Jeanne resides in Salt Lake City, Utah with her husband Steve. They raised four sons and a daughter, and now enjoy their eleven beautiful grandchildren.
Marlene Portnoy co-founded DTRF because of the frustration she experienced with the lack of information available and the lack of research on this rare disease. Her husband, Steve, was diagnosed in August 2004 with a retroperitoneal desmoid and has since been treated with surgery and radiation.
After graduating magna cum laude from Albany State University in 1981, Marlene pursued a career in sales, which she started at Corning Glass Works from 1982-1985 in Chicago, Illinois. She then moved to New York and worked for Playskool Toys, a division of Hasbro Toys, first as a sales representative and then as a District Sales Manager for the Middle Atlantic territory from 1986-1993. She then took time out to raise her two young children and became active in community service which has included activities such as running various social action programs, participating in the local soup kitchen, and working on golf outings and walk-a-thons for local community interests.
Marlene enjoys such active pursuits as running, hiking, biking and skiing. She has a passion for travel and experiencing other cultures. Marlene’s big bucket list items are finding a cure for desmoid tumors and going to Mt. Everest!
She resides in Tuxedo, NY, with her husband Steve. Marlene has two beautiful daughters, Brittany and Danielle, two wonderful sons-in-law, Adam and Mike, and THREE adorable grandsons, Grant, Mason, and Brooks. Her children and husband all take an active interest in the Foundation.
Lolita Jerido, PsyD, is DTRF’s inaugural Development Director joining in August 2022. In this new role, Lolita will concentrate on bringing nonprofit visionaries into the Foundation and lead the growth of DTRF’s core development resources through practical and impactful strategic initiatives that integrate the knowledge, research, and advocacy competencies. A continual learner with a curious mind, Lolita is a passionate development professional who focuses on communicating an organization’s story to foster engagement and investment. Her success is grounded in a notable track record of revolutionizing event profitability and performance.
Lolita has a diverse background of over two decades in the nonprofit health allied and marketing industry. As a visionary and strategic development executive, Lolita has served as the Executive Director for the Florida Academy of PAs, Deputy Executive Director for the Leukemia & Lymphoma Society – Northern & Central Florida Chapter, Vice President of Philanthropy & Communication of Shepherd’s Hope, Strategic Partnership & Community Events Director for Wounded Warriors Project and Development Director for the Children’s Tumor Foundation. She’s also an entrepreneur at heart, helping small businesses thrive as the Development Director for the SCORE Foundation. She is the CEO/Founder of Mega Mindz Prodcutions, LLC, an 8A-certified marketing consulting firm specializing in multi-cultural non-traditional, and experimental marketing.
Her experience spans mental health awareness, fundraising, and capital campaigns, building productive relationships, strategic planning, project management, knowledge sharing, vendor negotiations, B2B skills, marketing, and public relations, achieving and exceeding budgetary goals, communications, collaboration, member services, and retention, and volunteer acquisition.
When she’s not communicating the importance of access to quality patient care, Lolita loves to give back to the community, serving on multiple Boards such as The LGBT+ Center Orlando, Anchor 7 Federal Credit Union, and most recently, Vice President of Pink is Possible. She is a member of the Alpha Eta Chapter of the Zeta Phi Beta Sorority Inc. She participates in several community takeover days, such as feeding the homeless or Adopting a Highway.
Lolita is a proud mother of a Millennial/Generation Z daughter, Quianna, aka Queen, and an albino boa Precious. Creating lasting memories with her family and friends, traveling, riding motorcycles, reading, and playing softball are some things she likes to do during her free time.
Lynne’s life officially began on January 1, 2010 at 12:01am, just after she shot the starting gun for her first race. Since then, she has consulted on/timed/directed over 50 running events for local nonprofits. She initially learned about desmoids through running buddy, Sera Snyder, who was diagnosed with the disease and founded Running for Answers 5K in 2010. Lynne has been directing the 5K since 2002.
Although Lynne’s work experience spans many sectors/ industries (federal gov’t, retail, dotcom, large nonprofit, small nonprofit, small business), they pale in comparison to the depth and satisfaction she receives through her work with DTRF.
Lynne lives in Philadelphia, PA, the home of DTRF’s Annual Patient Meeting and RFA 5K.
Maggie is excited to be the Desmoid Tumor Research Foundation’s (DTRF) first Communications Manager. Her responsibilities are centered around promoting the DTRF’s mission, brand, values and goals through compelling messaging, images and programs both online and off.
She comes to the DTRF as a rare cancer survivor. Diagnosed in 2011 with Epithelioid Hemangioendothelioma (EHE) found in the liver and lungs, she has undergone a liver resection and multiple tumor ablations. Living just south of Pittsburgh, PA, she has been lucky to find doctors that have familiarity with EHE at UPMC and Hillman Cancer Center. With a ‘watch and wait’ approach, Maggie is able to have an active professional and personal life. Professionally, she has contributed web design/development and social media work for The EHE Foundation and feels this is the best way she can give back to her EHE community.
Maggie has also operated her own small web design, branding and digital marketing agency servicing small businesses and nonprofits. With a blend of creativity and strategy, her clients have enjoyed a single point of contact for all of their communications needs. This all-inclusive approach has allowed Maggie to develop a wide range of communication skills that she is thrilled to translate to the DTRF!
When she is not sitting at her computer, she enjoys spending time with her family, skiing with her kids, hiking with her dog and laughing with her friends.
Dr. Mrinal Gounder is the Scientific Director of DTRF and a member of the Medical and Scientific Advisory Boards. He is an Associate Professor of Medicine at MSKCC specializing in sarcomas and developing new drugs in cancer. He is an internationally recognized leader in desmoid tumors and leads clinical trials in desmoid tumors. He recently showed for the first time that sorafenib is an active drug in desmoid tumors. He completed his fellowship in medical oncology at MSKCC. Prior to arriving at MSKCC, he completed his internal medicine training at Northwestern University in Chicago and received his MD from SUNY- Syracuse.
Amanda Hoffman is the owner of ADH Communications (formerly Motus Video Design), offering full-service communications consulting to help organizations trying to make the world a better place turn their target audience into advocates and activists for their cause. For over six years, Amanda worked as a communications and marketing consultant for the IT consulting firm, Booz Allen Hamilton, supporting multiple federal government clients. She left the firm in 2014 to pursue her entrepreneurial passion full time. In 2015, she joined the National Environmental Education Foundation (NEEF) as their Communications Manager, but her passion for helping multiple causes she was passionate about lead her to eventually return to her consulting business. Originally from Boston, she graduated from American University in Washington, DC, with a BA in Journalism. Amanda is also a published author, editor and avid supporter of the arts, having danced competitively through her teens. She continued dancing in college, but at the age of 21, she was diagnosed with a desmoid tumor in her calf muscle. Since then, she has been through multiple treatments, including surgery and three chemotherapies, but still lives with the disease. She found DTRF in 2009 while searching for information on her rare condition and, eager to do what she could to help find a cure, volunteered her professional skills to the Foundation. Amanda was the Marketing Chair for the inaugural DTRF Running for Answers 5K and has served on the committee in a marketing and outreach consulting capacity each year since. Her current business was born out of her love for the work she was doing for DTRF. Since its launch in 2013, Amanda’s business has been an official sponsor for the Running for Answers 5K, filming and editing promotional videos for the event and DTRF. Outside of video production, Amanda advises the Foundation on PR, marketing, and social media management. She is honored to work with the wonderful and dedicated team at DTRF.
To learn more about her company, please visit her Facebook business page: https://www.facebook.com/
In 2008, Allison graduated with a Master of Science degree in Physician Assistant Studies. As a PA-C, she has practiced in multiple specialties, including Emergency Medicine for 10 years, Interventional Radiology for 4 years, and most recently, Telemedicine Post Acute Care/EMS services/Urgent Care for the last 2 years.
Allison was diagnosed with a Desmoid Tumor in Feb 2018, located in her left chest wall. She underwent extensive excision and reconstruction and has been tumor-free since March 2018, although not without long-term effects and chronic pain. Being a desmoid patient and a medical professional made her want to get more involved in the Desmoid Tumor Research Foundation and help those in similar situations.
Allison lives in Oxford, MI with her husband and our blended family of 5 kids. Therefore, my hobbies include chauffeuring and keeping 5 kids alive and well.
She brings her interest in research and science to our Published Research Advisor role.
Ms. Lucas has over 12 years of clinical research experience primarily in the early phase development of assets, including large and small molecules, across various therapeutic areas. Her career began with a small, start-up biopharmaceutical company as the lead in-house CRA with Eyetech Pharmaceuticals in NYC. Most notably, she was part of a small clinical team responsible for data collection and on-time database closure of a pivotal Phase 2/3 trial to enable fast-tracked FDA approval. She was part of the initial team, working with Regeneron Pharmaceuticals, in the start-up of an international Phase 1/2 program as Medical Program Coordinator III. A year later, she was recruited into Amgen’s Early Development Department as a Clinical Research Study Manager in Thousand Oaks, CA. At Amgen, she worked primarily with early phase oncology programs as well as a type 2 Diabetes Mellitus molecule. During her time at Amgen, was the CRSM for two international, acquisition and Co-Sponsor programs as well as multiple oncology Phase 1 and Phase 2 studies. She was responsible for maintaining communication across a highly matrixed environment including more than one sponsor, cross-functional teams, as well as oversight of Investigator and Site activities. Ms. Lucas is also involved with the Desmoid Tumor Research Foundation (DTRF) as an advocate as well as a volunteer collaborator in the first international, natural history study and Desmoid Tumor patient registry which is in collaboration with the National Organization for Rare Disorders (NORD). She joined RRD International LLC as a Clinical Project Manager in December of 2020. In this role, she supports the overall and daily clinical operations activities on behalf of RRD’s partners for clinical trials. She has a passion to serve patients with serious or unmet medical need by helping to make potential therapies and treatments accessible to them. Ms. Lucas is graduate of Clemson University with a BS in Biological Sciences and was chosen in 2008 to participate in the Alta Bates Oncology Preceptorship in Berkeley CA.
Bill has over 20 years of experience designing experiences for high profile companies such as IBM, Toyota, AT&T, and more. Moving from a traditional creative design and director role to UX Architecture, Bill has been able to combine his design skills with user focused methodologies to drive award winning experiences for his clients. When his daughter Suzy, was diagnosed with a Desmoid Tumor in her left calf, he knew he wanted to support our cause in any way he could. Bill joins our team to provide design services that help solidify our brand, our visual presence, and our user experience, that in turn support our cause to make a difference.
Philip Grand, DTRF technical advisor and webmaster, is a software industry veteran with over 25 years of experience developing software for the computer, telecommunications and pharmaceutical industries. He has a B.S. from Northwestern University and a M.S. from the University of Southern California in Computer Science.
Philip has designed and developed applications supporting the eCommerce, Financial, Manufacturing and Research areas of several Fortune 500 companies. He has also created various digital photo slide shows incorperating music and special effects.
He currently owns and operates P Grand Technology LLC and works for Barenecessities.com. Philip resides in Hillsborough, New Jersey with his wife, and two daughters.