A mother, grandmother and educator, Diane McSwain worked for 20 years as a teacher’s aide for special needs children in the towns of Crystal Lake and Barrington, Illinois. In early 2015 Diane’s life changed when her first granddaughter Isabel was diagnosed with TS shortly after birth. She left her work in education to help care for Isabel and became active in advocacy and fundraising efforts to support TS research. Diane participated in the TS Alliance’s March on Washington in support of Federal funding for research and met with a number of representatives to ask for their support. It was during one of these meetings that Diane met Julie Scroggins and was introduced to Bcureful. Diane was immediately attracted to Bcureful’s unique mission of providing access to top TS specialists for those who need it most, and for whom access might be out of reach. Inspired by her experiences as a volunteer, her desire to join Bcureful’s leadership team is driven by a passion to find the best way to help Isabel and others who share her diagnosis.
Diane has two daughters, Brook and Kelly, and one granddaughter, Isabel. Her hobbies include cooking, gardening, swimming and reading.
Scott Brown is a Finance Project Manager whose son Derrick was diagnosed with Tuberous Sclerosis Complex shortly after birth. Grateful for the hard work and dedication of those who previously championed for TSC research, Scott and his family have dedicated themselves to joining the fight for a cure.
Despite a whirlwind history of medical adventures, Derrick is thriving due to advances in TSC treatment. Scott has volunteered for the Chicago Step Forward to Cure TSC Walks since 2010. In recent years, he has led both the Chicago and Nashville walks and is constantly awed by the power of people working together. He has been asked to join other TSC advocates at the annual March on the Hill in Washington D.C. and is deeply honored to be a part of the Bcureful team.
Scott’s hobbies include remodeling his “fixer-upper” home, following his beloved Cubs and Blackhawks, and woodworking. Above all else, he is keenly aware of the many blessings in his life including his amazing wife Renée, daughter Sophia, son Derrick, and their dog Sully.
Silvia Rodriguez-Nieto was a Bcureful volunteer before invited to become a Board Member. She has worked in a professional capacity with Bcureful founder, Julie Scroggins, since October 2000. She learned more about the disorder and those affected by watching Julie’s daughter Mary Ann grow up and cope with TSC. Deeply moved, she knew she had to be involved.
Silvia’s professional background is in human resources and accounting. She’s known for her organizational skills and love of numbers. She has a Bachelor of Business Administration from Loyola University Chicago and has studied French and Literature, as she also has a love of foreign languages and reading.
Silvia is a first-time mom to Abby, a wonderful little girl. She is now healthy and thriving after overcoming complications with breathing when she was born. As a mom, anything that impacts the health of children is close to her heart. Silvia enjoys spending time with her family, which also includes the family dogs Lola and Enzo.
Erica Chilla was Mrs. Alaska USA 2014. She used her title to promote awareness for Tuberous Sclerosis Complex for children like her son Ace, who she calls her TSC Warrior! She is an evangelist for TSC. Erica hopes that one day she will actually say the words “Tuberous Sclerosis Complex” to a person with the knowledge and skills to find a cure. Until then, Erica, her husband Shawn, her two other sons Easton and Steyr, and family and friends in her supportive Alaska community will continue to fill each day they are blessed with Ace with as much joy and happiness as possible.
Erica became involved with Bcureful when the founder reached out to her after learning how she was using her crown and title as a megaphone to build awareness for TSC. Erica and her mother came to the fundraiser that year and Ace was the star of the event. As Erica says: “It is impossible to be around Ace and his never-ending smile and not be filled with hope for the future of those living with TSC. If that sweet boy can share it with us, I will do my very best to share it with everyone else.”
Carrie Draper is a Senior Project Manager at Youtech, an integrated marketing and development agency where she provides the highest levels of customer service through digital and traditional marketing. Carrie’s formal education in psychology and sociology – paired with ten years of experience in the hospitality industry – has given her unique perspective on human behaviors in individual and social settings.
Carrie was introduced to BCureful when her client’s granddaughter, Isabel, was diagnosed with TSC as an infant. As a regular attendee and supporter of events dedicated to building awareness and funding research for TSC, Carrie became more interested in the TS Alliance, BCureful, and the amazing TSC community. In 2018, Carrie was honored to accept an official invitation to join the BCureful Board. She hopes her advocacy will be a valuable asset in getting one step closer to finding a cure.
Elizabeth first learned about TSC when her best friend’s granddaughter, Zoe, was diagnosed. After attending a Bcureful fundraiser and learning more about the disorder, Elizabeth was hooked and wanted to be involved.
She and her husband, Greg, live in Bellingham, WA, and spend winters in Palm Springs, CA. Besides being an avid hiker, singer and bell ringer, Elizabeth enjoys volunteering in the reading and homework room at Boys and Girls Club of Cathedral City, where she serves on the Board of Directors.
A graduate of Louisiana State University, Elizabeth enjoyed a career in the title insurance and escrow services industry. She received the Magnificent Manager Award from Stewart Title Company, and the Business Person of the Year Award from Business Pulse Magazine. She retired in 2011, and is busier than ever. Besides Bcureful, she has served on several non-profit boards including Boys and Girls Club of Whatcom County; Childcare Worldwide; and Compass to Campus, a division of Western Washington University.
As the Marketing Manager at RATIO Architects in Indianapolis, Brook interfaces with external consultants and RATIO’s business development, operations, and design professionals to craft award-winning strategic messaging and proposals in support of the firm.
Brook became aware of BCureful in 2015, when her niece Isabel was diagnosed with TS shortly after birth. As she became more involved with TS advocacy and interested in supporting the BCureful cause, Brook was designated an official Board Member in September 2017.
Brook lives in Central Indiana with her husband Chris, her stepson Colten, and her black lab Gozer. As lifelong baseball fans, Brook and Chris are excited to follow Colten’s commitment to play for the Michigan State Spartans this fall.
Mary Ann Scroggins
Mary Ann lives in Boston and recruits for pharmaceutical and biotechnology companies working to find cures for rare diseases. Following an automobile accident in 2009, Mary Ann had an emergency room exam that confirmed she, fortunately, had no injuries from the crash. However, it was through those same tests that she received her Tuberous Sclerosis Complex (TSC) diagnosis, involving the brain, kidneys, eyes, lung and skin. Mary Ann views her diagnosis as an opportunity to help others that are more severely impacted by this disorder and hopes to see a cure in her lifetime. She is not only the inspiration behind Bcureful, but with her buoyant personality and care for others, her ready smile, and her intellectual curiosity and eagerness to embrace all that life has to offer, Mary Ann is an inspiration to all who know her.
Liaison Between The TS Alliance & Bcureful
In 2011 Julie founded Bcureful, a grassroots nonprofit devoted to advancing research toward the cure for TSC as well as raising public awareness of the disorder and helping to bring expert medical care and support to people where they need it. She is incredibly proud of everything the team of volunteers at Bcureful and their supporters have accomplished. She looks forward to watching its new leadership continue to grow the organization and find new and innovative ways to fulfill its mission.
In January 2018, Julie joined the staff at the TS Alliance as Regional Program Manager, West. She has been involved with the TS Alliance since her oldest daughter was diagnosed with TSC in 2009. Since then, she has served on the Government Action Team, Science and Medical Committee, Audit Committee and most recently on the Board of Directors.
Professionally Julie spent 37 years in the automotive industry and earned national recognition for her efforts at marketing to — and elevating the automotive experience for — women. Julie and her husband Dave have three children, Mary Ann, Chris and Mabel. She enjoys spending free time with family and friends, meeting new people and traveling.
Julie now serves as Liaison between the TS Alliance and Bcureful. In this role, she continues to identify ways in which the two organizations can work collaboratively for greater impact.