Each year on April 8, a growing community of patients reflect on their experience with a rare disease named after Dr. Harvey Cushing’s discovery of “polyglandular syndrome” in 1912. Dr. Cushing was a pioneering American Neurosurgeon born on April 8, 1869 in Cleveland, Ohio.
Dr. Harvey Cushing had many impressive accomplishments in addition to his official discovery and first diagnosis of “polyglandular syndrome”, which was later renamed Cushing’s syndrome. He was also a Pulitzer Prize-winning author and introduced North America to the wall-mounted blood pressure monitor after learning about this non-invasive technique from an Italian colleague while traveling abroad in the late 1800s. He is credited with making blood pressure an official vital measurement with the introduction of this machine that measured systolic pressure. Another physician discovered a way to measure diastolic pressure in 1905 and expanded the machine to become the precursor to that in which we have all found ourselves dozens (or hundreds) of times in our lives.
There is a saying attributed to Dr. Cushing that is so very relevant with this and really any other disease: “A physician is obligated to consider more than a diseased organ, more even than the whole man – he must view the man in his world.”
We are thankful for the physicians who understand and practice this daily, and we are committed to supporting those doctors who are just learning about the disease but willing to believe and test patients who suspect they may have some form of hypercortisolism.
We are encouraged by so many Cushing’s patients who are proactive in their own lives, supportive of others, and engaged in research and other projects that lead to better outcomes for all of us. We are here to support all Cushing’s patients at all points in the process to diagnosis, through treatment, and to the “new normal” on the other side.
Check out our members’ Cushing’s Awareness Day projects here: http://www.csrf.net/IAMRARE
Please consider making a donation!
There’s still time to Join Our 2023 Awareness Campaign!
Here are three different ways you can get involved in Cushing’s Awareness Day 2023 on your social media along with CSRF. Don’t forget to include hashtags to link with others looking for resources using those key words!
WHY IAMRARE? HERE’S A HINT!
1. Create a Written Piece
Use one of these prompts to share a bit about your story, 500 words or less.
“I am rare and….” or “I am rare but….”
SEE EXAMPLES HERE
2. Create a Photo Collage
Suggestions:
- one photo in active Cushing’s, one either before or after
- one photo of you now
- a collage of photos to include any of the above, physical symptoms (bruising, moon face, etc), anything that tells your story and that you are comfortable sharing
How to make a collage on your phone:
- Open Google Photos
- Select up to six photos
- At the bottom click “+ Add to”, then select “Collage”
- Choose the layout and design you like
- Make edits until it’s how you want it (crop, enlarge, shift photos, etc.)
- Save!
- Share on social media and with CSRF
Whether you create a written piece, photo project, or both, please post on social media in time to advocate for Cushing’s Awareness Day on Saturday, April 8. Use as many of the following hashtags as you find appropriate. We included five of the most common first symptoms of Cushing’s but feel free to add more of your own.
#cushingsawarenessday
#csrfcommunity
#cushingsdisease
#cushingssyndrome
#rarediseaseawareness
#rarediseases
#rarewarrior
#patientadvocate
#chronicstress
#obesity
#highbloodpressure
#diabetes
#insomnia
- We suggest starting a fundraiser two weeks before the date and running it for one week after, but there are no rules here! two weeks before April 8 is March 25
- In Facebook, choose “Fundraisers” from the menu or search the term “Fundraisers” to get there.
- Click “Raise money” or “+ Create fundraiser” – both buttons go to the same place.
- Select Nonprofit – start typing “Cushing’s Support and Research Foundation” and we will appear.
- Edit the details on the next screen. The Fundraiser Title should be ok. Delete the suggested description and copy and paste the text below (immediately follows step #10) into that box.
- Change Goal Amount to $154.00.
- We suggest an end date of April 15 (one week after Cushing’s Awareness Day) but you are welcome to set this as you wish.
- If you are also on Instagram, check the bottom option to “Raise more money on Instagram”.
- Hit Create!
- To be recognized in an upcoming newsletter, please send a screenshot at the end of your fundraiser, it can be difficult to get accurate information from our end.
Join me in supporting a great cause! My goal is to raise $154 or more for Cushing’s Awareness Day on April 8 – the birthday of Dr. Harvey Cushing, brilliant American brain surgeon, whose legacy has touched my life. The number 154 is in honor of the years since his birth in 1869.
Your donation will help Cushing’s Support and Research Foundation, Inc. (CSRF), a 501c3 non-profit created by patients almost 30 years ago to support patients like me with assistance, validation, and advocacy. Your contribution will make full impact whether it’s $5 or $500 because 100% of your donation goes to CSRF through this social media platform. Thank you in advance for your support. To learn more about Cushing’s Disease and Syndrome, CSRF, and Dr. Harvey Cushing, please visit: csrf.net/CushingsAwarenessDay2023.