Dina Thachet

Lupus Patient Advocate, Lupus and Allied Diseases Association (LADA)

Dina Thachet is fortunate in that she realized early on that her purpose in life is to be of service to others. She is a consummate professional who uses her talent, skills and lived experience to make a difference for others in both her professional life and in her personal life.

With a degree in Early Childhood Studies, special certification in working with medically fragile children and children  with special needs, and as a Board Certified Child Life Specialist (CCLS), she has dedicated her career to bringing hope and healing to children and families facing incredible health challenges. Her career at Make-A-Wish Illinois as the Referral Outreach Manager has spanned over 21 years, during which she has built a nationally recognized and replicated outreach department and strategy. She has been responsible for successfully educating the medical community about the healing impact of wishes on children with critical or life-threatening medical conditions and ensuring that they are referred to Make-A-Wish. Dina’s efforts, dedication and passion have since helped bring hope, resilience and joy to thousands of children and their families. In addition to being employed by Make-A-Wish, she is also an active wish- granting volunteer, and has fulfilled over 100 wishes in her spare time.

On a personal level, Dina is a strong leader in the lupus patient advocacy and advisory community. Diagnosed with Systemic Lupus Erythematosus (SLE), Stage IV Lupus Nephritis and fibromyalgia over 27 years ago, after being hospitalized for a month, pronounced clinically dead three times and given a 5-year prognosis, Dina courageously shares her journey as a lupus nephritis thriver to help patients and families, physicians, elected officials, pharma and others to increase awareness, inspire empathy and improve treatment, outcomes, and quality of life for lupus patients. Soon after diagnosis and after coming to terms with having been pronounced dead, yet surviving, and being given the 5-year prognosis, Dina made a very conscious decision to use her experience and voice to positively impact others diagnosed with lupus, and to ensure that her journey and all that she had endured were not in vain. She continues with the same vigor and grit.

Dina is involved with a variety of patient advocacy and advisory entities, including Lupus and Allied Diseases Association (LADA) and the Lupus Research Alliance (LRA), and has advocated on Capitol Hill for many years to fight for research dollars for better treatment options specifically approved for lupus and lupus nephritis. In the spring of 2021, she was honored to represent LADA and provided compelling oral and written comments for the ICER Draft Evidence Report. She has participated in patient advisory efforts with several pharmaceutical companies over the years such as GlaxoSmithKline and Aurinia to ensure that the patient experience and suggestions are factored into drug or treatment development. Dina is exceedingly passionate about Diversity and Equity in all aspects of her life, and is a staunch advocate for addressing and eliminating health disparities, and for equitable health care and access, especially as it relates to minority health. She is an active member of the LRA Multi-Cultural Outreach Task Force (MCOTF).

Dina’s health journey has been further complicated with diagnoses of endometriosis, a pituitary adenoma and secondary infertility due to chemotherapy treatments for the lupus nephritis. Dina believes that every individual who is diagnosed with any medical condition who plans to or might one day wish to become a parent, or become a parent again, is given information, support, and fertility preservation options prior to starting any treatments, especially those with known or potential negative impact on reproduction or fertility. Her own journey to becoming a mother was fraught with despair, adversity and losses that she knows would have been prevented had she been appropriately advised and supported when first diagnosed.

That said, Dina is now the proud and blessed mother of her miracle baby, 3-year old Isla, and they live in the suburbs of Chicago with her husband of over 17 years, Nittin. When she is not working, advocating or running after Isla, she enjoys cooking and baking, throwing dinner parties, volunteering, reading and travelling.