Support Tara's Journey- Battling Rare Undiagnosed Diseases
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I am here to support a dear and passionate friend who, over the years, has inspired and encouraged me, helping me see the positivity and light that shines in all of us, even during the most challenging times.
Tara is fighting two rare and life-altering conditions: Myeloproliferative Neoplasm (unclassified)/Polycythemia Vera, a rare blood cancer in which 95% of patients carry a mutated JAK2 gene, but Tara does not. This has left her medical team without clear answers or a pathway toward a curative option. Her disease is being managed with targeted immunotherapy, but over time its effectiveness has diminished. Despite extensive workups, the underlying cause of her Myeloproliferative Neoplasm (unclassified)/Polycythemia Vera remains unclear.
The impact of her debilitating symptoms, particularly fatigue, malaise, intense itching, and recurrent nasal hemorrhaging that has sent her to the ER many times, has significantly affected her quality of life, physical and social functioning, and mental well-being. She found that more than 47% of her working hours were spent managing her disease, and she eventually had to resign from her employment.
She also lives with an Systemic Tendon Disease, which has already required eight surgeries, with more ahead. Both of these rare diseases remain undiagnosed at the genetic level, which she is a patient in Stanford’s Undiagnosed Diseases Network (UDN) and the Genomics Research to Elucidate the Genetics of Rare Disease (GREGoR) Consortium.
Being part of these groundbreaking investigations involves extensive diagnostic testing, frequent medical evaluations, and travel to specialized research centers, all while managing her debilitating symptoms. The high cost of living with chronic and rare diseases has left Tara in financial toxicity, unable to work and struggling to afford even basic living expenses, medical care, and the costs associated with participating in research.
This campaign not only supports Tara in her journey but also sheds light on the financial challenges faced by those living with rare and chronic illnesses.
Tara’s long-term goal is to find a cure for her diseases, return to work, and launch a non-profit dedicated to funding institutional research for rare and undiagnosed diseases, helping others who face the same uncertainty she lives with every day. She recently completed a course on the Evaluation of Undiagnosed and Rare Conditions, earning a certificate from Stanford University School of Medicine.
She urgently needs help to cover basic living costs, medical care, travel for research participation, and post-operative rehabilitation as she continues her fight and contributes to rare disease science.
How You Can Help:
Donate: Please contribute what you can. Tara’s immediate needs include financial security to cover housing, food, transportation, insurance, medications, testing and research, surgeries, and essential post-surgery rehabilitation programs.
Leverage Your Network: Share this page and links with your network on social media and email by clicking the share button. Use any avenues you have to make this campaign go viral.
Pick Up Your Phone: Do not rely on social media and emails alone. Call your friends, family and your community. Talk about Tara’s story and why it’s important to YOU.
Thank you for helping Tara continue her fight, and for showing that no one has to face this journey alone.
With gratitude,
LeLe Del Fabbro
Links to Tara's Journey and Updates:
Tara's You Tube - Living with Rare
Tara's Instagram
Links to Foundations Tara Supports:
Center for Undiagnosed Diseases Stanford University
National Organization for Rare Disorders
MPN Research Foundation
Organizer and beneficiary
Lele Del Fabbro
Organizer
San Luis Obispo, CA
Tara Barrett
Beneficiary