Sarah Jones Medical Fund

Hi, I'm Carol Jones, Mom to Sarah Jones! With the encouragement of friends and family, I, along with her brothers and a couple of her friends, Liz, Kimberly and Margie, are raising funds to help Sarah with medical expenses and travel.

In case you don't know, in March 2020, Sarah began struggling with perplexing symptoms. She saw numerous physicians, and finally, in 2021, the Mayo Clinic in Scottsdale diagnosed her with EGPA. Her maddening story of reaching a diagnosis was published in the Thoracic Society Patient Voices annual booklet. You can read the article HERE.

What's that? EGPA (formerly known as Churg Strauss) is a rare form of vasculitis impacting 2 in 1 million people in the US. It occurs when specific cells in your blood or tissues inflame (swell). The inflammation can affect many organs, including the lungs, heart, peripheral nerves and kidneys. Although the cause of the inflammation is unknown, experts suspect it has something to do with the immune system failing to function correctly. Because it is so rare, there are few treatment options and very little research to address it.

There is no cure for this disease. There is no true remission. The best hope is to quiet the disease for a bit of time. As Sarah says, "I am looking forward to two good days in a row!". This may be possible with the right treatment regime that she can tolerate.

Sarah has run non-profit organizations throughout her career that helped other people and families cope with difficult situations. Now our support is needed. Sarah decided to step down as the CEO of PMD Alliance because of her illness. She applied for disability, and while her disease is on the short list of eligible conditions, she was denied and is now facing another six months without any income. Pam, her wife of 27 years, has reduced her work hours as a hospice medical social worker to manage the household and help Sarah.

She writes, "Chronic disease is relentless. It impacts and exerts power over my body and every movement. And it doesn’t stop there. Its control extends its reach to my core care team.” Sarah depends on me, Pam and her brothers for help and to attend appointments – she cannot participate alone as she cannot track the conversations and effectively share with the physicians.

She has been prescribed numerous chemo drugs (three of the four available resulted in life-threatening reactions), but her polypharmacy has unsuccessfully stopped the advancing symptoms. Very few physicians in the country have knowledge and experience in treating her specific disease. In consultation with the NIH Vasculitis Center, she was told her best chance is to see physicians at the Cleveland Clinic to explore new avenues to treat EGPA.

Sarah is passionate, committed and giving, but now, more than ever, she needs our friendship and financial support. It's always been easier for Sarah to give than receive, but today she needs help.

Will you please join us to support Sarah on her healthcare journey? A gift of any size will make a difference.

Thank you,

Carol, Liz and Kimberly

P.S. Gifts of airline miles or hotel points are also very appreciated!