April is Cushing’s Awareness Month!
Join CSRF in our Cushing’s Mindfulness-A-Thon Fundraiser by participating in conscious, thoughtful activities while raising funds for research.
According to our 2023 global quality of life survey, 95% of respondents agreed with the statement “Healing is a slow process that does not only include normalization of cortisol.” It’s often not easy to find the time or the right activity that will allow us to turn off the brain, breathe deeper, and do something just for ourselves, unattached to other errands and not squeezed in between tasks for others. Let’s get intentional about it for a month together, see what happens!
The Mindfulness-A-Thon is a fun and accessible activity for Cushing’s patients, family members and friends of all ages in which participants will track minutes they spend doing a variety of mindful activities. Sign up instructions below.
Our goal is to raise $25,000 for Cushing’s research as we establish a microgrant and honorarium funding mechanism at CSRF that will support new and young investigators and other non-commercial scientists and researchers doing work that aligns with our mission and directly contributes to the development of new therapies or devices, solutions for unmet needs, and the eradication of health disparities. We ask for your help! 100% of net proceeds from this campaign will go directly to this work.
Spread the word and invite friends, family, and colleagues to donate, or better yet, to join this month of exploring mindfulness and self-care. Together, let’s make mental, spiritual, and physical wellness (and Cushing’s research!!) a priority in 2024 and beyond.
As an added bonus, enjoy all merchandise from our Bonfire Store at the lowest prices possible… at cost during the entire month of April!
If you prefer not to participate in the Mindfulness-A-Thon, but still wish to donate to our event, you can do that here!
Need some inspiration? Some examples of self-care and mindful, grounding activities:
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Take a look at the incentives we have in store for you during the Mindfulness-A-Thon!
How To Sign Up
Follow the steps below or download a pdf HERE
1. Create your pledge page by visiting this link – www.99pledges.com/fund/cushings/addme . Enter your name and email, then click ADD.
2. Check your email for a message from Gretchen Jordan that will contain a link to your profile management page where you can set your photo, personalize your message, and individualize your pledge and total minutes goals. More advice on how to do this is in the FAQ below.
3. You can customize everything on your profile management page! Don’t forget to click ‘SAVE’.
4. On the Invite tab, you can enter email addresses or a phone number to send a text to those you’d like to invite to pledge.
5. On the Track tab, you will be able to enter the number of minutes you participate in a mindful activity each day throughout the month of April.
6. Share your personal Mindfulness-A-Thon website with friends, family, coworkers and on social media. Your supporters will be able to make either a one-time gift or pledge a donation based on the number of minutes you complete in the month. There is more advice on this topic in the FAQ below. All participants will be able to earn prizes!
Would you also like to contribute to a bit of research while you raise awareness and funds? The 99pledges website we are using for the Mindfulness-A-Thon is the best we could find to run the campaign, but one thing it doesn’t offer is the ability to list activities, or have participants list what they are doing. We think that a month’s worth of real patient data about what we do to relax, find peace, and cope with this disease could be helpful for other patients, and another interesting point of view for everyone else who knows and works with us.
Once April is over, we will compile an infographic or one-pager about the most popular things our group got into for the month. If you’re in, guess what? We have an app for that!
1. On your mobile device, visit this link for the CSRF Mindfulness-A-Thon Activity Log: https://app.jotform.com/240774392379165
2. A pop-up will appear and you can add the app page to your phone’s home screen to be easily available for logging minutes each day. (it will look a little different on an Android)
3. Each day you participate in the Mindfulness-A-Thon, when you plug your minutes into your 99pledges site, pop over to the app to list what the activity was:
4. When you hit Submit, your entry will be saved in the CSRF Mindfulness-A-Thon Activity Log. If you already have (or create) a Jotform account, your entries will be recorded in a spreadsheet in that account. Having a Jotform account is not required for this activity, but if you’re a data nerd you might like to watch your progress!
Remember, the 99pledges Mindfulness-A-Thon website on the previous tab is what you will share with friends, family, coworkers and on social media and begin collecting donations. This app is only if you wish to submit additional data about the activities you are actually doing to help us build the infographic with our deidentified aggregate data once the month is over.
FAQs
Below are some of the most Frequently Asked Questions and Answers
The R in CSRF stands for research, and we have been making significant moves to establish more of a presence in the research community. With the establishment of the Cushing’s Patient Registry (target soft launch January 2025), we are creating new data to be used by scientists whose work is aligned with the CSRF mission. The 2024 Mindfulness-A-Thon will raise seed money to establish a Microfund to direct financial resources to research with future priority given to those who use the data from the Registry.
There is no single target for research, and “for a rare disease” we have many established clinical experts and several FDA-approved medications. A small sample of our community’s ongoing needs:
- a device that can enable more accurate round-the-clock cortisol measurement to help with difficult diagnoses
- a cortisol pump for patients who end up with adrenal insufficiency from their Cushing’s experience and do poorly with standard replacement therapy
- therapies for post-surgical brain fog, executive dysfunction, and focus and memory decline
- establishment of evidence of long-term impairments even after successful surgery in the long pursuit of validation and additional monitoring and treatment
- efficacy studies of mindfulness and other “non-clinical” techniques to alleviate some of the persistent quality of life issues faced by patients at all points of the journey
- establishment of trustworthy predictive values of signs and symptoms to ultimately advocate for inclusion of cortisol testing during annual exams and other times for certain patients (ex. those who have been diagnosed with and seem to be poorly managing type 2 diabetes, PCOS, and metabolic syndrome)
- exploration of further standardization, validation, and other “confirmatory” studies for testing and diagnosing
The Mindfulness-A-Thon will run during Cushing’s Awareness Month, April 1st-30th, 2024. Participants can sign up anytime, even two or three weeks into the project. “Offline” donations and pledges may be collected by participants and turned in to CSRF by the end of May.
Track your Mindfulness Minutes directly on your 99Pledges participant page. When you click on the link sent to you in the invitation email, navigate to the “Track” page. Minutes are saved automatically after entering them.
If you are also contributing to the specific activity project via the app, make sure to upload that information as well. Details on both of these can be found in the two drop down sections above this FAQ.
Your profile is currently set to a default goal of $200, but you can move that to whatever fits your interest in fundraising plus the
size of your online and offline social networks. It can also be increased, if you keep it low and meet that goal quickly.
Your profile is also currently set to a default goal of 200 minutes, but this can be changed too! 200 minutes in a month is equivalent to about an hour per week spent on an activity. Other examples: 10 minutes every day = 300 minutes / month, 30 minutes a few times a week = 400 minutes / month, 30 minutes every day = 900 minutes / month, and an hour every day = 1800 minutes / month.
Receiving pledges by credit/debit card, PayPal, ApplePay, or GooglePay is the easiest way to contribute. These donations are instantly processed by 99pledges / PayPal and received by CSRF.
If participants collect cash donations, they should write one check from their personal account or obtain one money order at the end for the full amount to send to CSRF.
If participants collect check donations, please make sure they are made payable to CSRF or Cushing’s Support & Research Foundation. Please double check before you accept it and before you send it to CSRF to ensure signatures and dates are complete and the payee is correct.
Physical donations may be mailed to:
CSRF 4155 Lawrenceville Hwy, #8130 Lilburn, GA 30047
Flat Donations are one-time donations and are charged right away.
Performance-Based Pledges are per-minute commitments that your donors are making where the final amount of the donation depends on how many minutes of activity you do in April, and they will not be charged until the end of the project. There is room for this to get a little messy: for example, if someone intends to make a donation in the $100 range and pledges 10 cents per minute, but you complete an hour of activity every day in April. That’s 30 days x 60 minutes = 1800 minutes = $180 donation.
Please keep an eye on what people have pledged, and communicate with them if you have any questions. Once the fundraiser has ended, CSRF will also review all performance-based pledges for anything that really stands out and looks like an error, before allowing 99pledges to charge donors’ credit cards.
There is no minimum donation, any amount is appreciated!
Once you have customized your participation page, it’s ready to send the link to anyone you know! Reaching out to your friends and family is a great place to start. Also, reaching out to local businesses and social groups such as your volunteer groups, book club, coworkers and religious groups for sponsorships is a great way to increase your donations.
Many employers offer matching programs so they can give back and support non-profits that are important to their employees. Check with your employer or HR department to see what the rules are for the matching program. The employee makes a donation online via their participant page, submits the donation in accordance with their company’s policy, and then the company will make their donation to the non-profit. They can submit a donation online on your page or send a check to CSRF in the mail with the participant’s name in the memo line. It may take longer than the fundraiser is running to receive a check, but you will still get credit!
There is no startup cost or platform fees. There is only a standard transaction fee, which is charged by the credit card companies. When a donation is made, the donor can decide to cover the 2.9% plus 30 cents per transaction (credit/debit card, PayPal, ApplePay, or GooglePay). It allows donations to be securely deposited into your account. The fee does not go to 99Pledges. If the fee is not covered by the donor, it will automatically be deducted from the online funds raised at the end of the fundraiser and go to the credit card companies.
Yes, you can visit the Tracking tab on your participation Admin page.
After a donation is made, 99Pledges will automatically send a ‘thank you’ note and receipt to the donor which will include the CSRF 501c(3) Tax ID so donors can claim their tax deductible donation.
CSRF and 99Pledges NEVER share nor sell email addresses (or any system data) to any third party. The only information needed from the participant is the first name/last initial, thereby making the name generic. Pages are not indexed by search engines.
Yes. The 99Pledges website takes security seriously, and actually never see the credit card information. The payment processor, Braintree, is a level 1 PCI DSS compliant service provider which means they meet the most stringent guidelines. They are also on Visa’s Global Compliant Provider List and MasterCard’s SDP List.
We have ongoing volunteer opportunities available with the Cushing’s Support and Research Foundation. To find out more, please email [email protected] or [email protected]
If you have difficulty with the 99pledges website or a technical issue, please contact their representatives at [email protected]
If you have any questions about the fundraiser or how to sign up, please send an email to [email protected]
Yes! Visit CSRF’s Mindfulness-A-Thon Prize Center to see what you can earn at different donation levels. You may also opt out of receiving prizes if you wish to do that.
Since there will be options, we will reach out to you to collect your choices after the fundraiser is completed.