Cushing’s community gears up for April 8 Awareness Day
Xeris Pharmaceuticals, research foundations among event sponsors
Cushing’s Awareness Day is April 8, and the Cushing’s community is gearing up with events and fundraising efforts to spread awareness and raise money to combat the disorder.
In celebration of this year’s Awareness Day, Xeris Pharmaceuticals, which markets Cushing’s treatment Recorlev (levoketoconazole), is teaming up with the Magic Foundation, a nonprofit focused on helping people with hormonal disorders, to host a virtual town hall meeting.
The hour-long event, “See Me Now: Our Cushing’s Story,” will take place 6 p.m. CST April 8. Two people with Cushing’s will share their journeys to diagnosis and their experiences navigating treatment.
“Hear from Emily and Mark as they discuss the power of self-advocacy highlighting their lived experience not mirroring the ‘typical’ physical representation of having Cushing’s, and a treatment option that has helped them both,” an advertisement for the event says. The event is free, though registration is required.
The Cushing’s Support and Research Foundation (CSRF) is marking Cushing’s Awareness Day with a “Mindfulness-A-Thon” taking place throughout the month. The foundation is encouraging patients, family members, and supporters to engage and track minutes spent on mindful activities, which may include anything from yoga and exercise to listening to music and being in touch with friends.
Anyone who logs at least 100 minutes of mindful activities will receive a theme sticker. Prizes such as beverage tumblers and T-shirts will be awarded to participants who meet certain fundraising goals through pledges or donations.
The foundation aims to raise $25,000 to support research focused on improving care for people with Cushing’s. Donations can be made without taking part in the challenge, and merchandise is available from the CSRF’s Bonfire store.
Cushing’s syndrome is a general term encompassing any condition in which symptoms are driven by excess levels of the hormone cortisol. Cushing’s disease is a relatively common form of the syndrome that’s driven by a tumor in the brain’s pituitary gland. Cushing’s also can be caused by tumors in other parts of the body, or it can develop as a side effect of certain medications.
There are many causes of Cushing’s syndrome. Regardless of the underlying cause, supporters say Cushing’s is frequently overlooked and misunderstood, which can leave patients feeling isolated. Cushing’s Awareness Day is an effort to boost awareness and support the community.
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