Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

A Day in the Life Challenge-2022

Guidelines for #MayMomentum’s A Day in The Life Challenge

[Patients, caregivers, and advocates]

 

This year’s 2022 #MayMomentum Stories theme is “A Day in the Life.” Video is our strongly preferred format for #MayMomentum Stories, but we understand if you prefer to write your story.

 

Video instructions: Shooting on your smartphone works great. Be sure to hold the phone horizontally when you shoot. Videos should be no longer than about 2 minutes.

 

Written story instructions: If you’re providing a written story, aim for a maximum of around 200 words. Please include a photo of yourself as well (any photo you like is fine, as long as it’s not really small).

 

Follow these instructions:

What does a day in the life living with chronic, complex disease look like? Take a video and let us know in 2 minutes or under. Follow these steps:

 

  1. Record your video.

  2. Post on social media using the hashtag #DayintheLifeOMF. (Don’t forget to tag us, @OpenmedF)

  3. (Optional!) Tag at least one person who is also living with chronic illness and nominate them to join the conversation!

  4. Be sure to let your followers know to support OMF’s May Momentum campaign so we can advance research and find treatments or a cure.

     

     

    Not on social media? No problem! Here’s how you can participate: Please email your materials to rebecca@omf.ngo or add them to our Google Drive folder by following this link. You can drag and drop your materials into the folder or click the “New” button, then “File upload.” (If you prefer to use a different file sharing service, please email Rebecca to let her know.)

    Key points to talk about:

     

    • What’s your name?

    • What’s your connection to OMF? (Patient/supporter, caregiver, volunteer, etc.)

    • How has OMF’s work impacted your life on a daily basis? Tell us about either a specific day, or an “average” day.

    • If you’re a patient, what did a day in your life look like before you got sick, and what are you most looking forward to doing again?

    • If you’re a caregiver or know a patient, what was it like to spend a day with that person before they got sick? What are you most looking forward to doing with them again?

    • What signs of momentum towards ending ME/CFS have given you the most hope this year?

    • Finish your story by inviting people to support the May Momentum campaign and provide the web page URL, www.omf.ngo/MayMomentum2022 (see examples below)

       

      Note: Feel free to be as creative as you wish. In your video or the photos you send, you can include images or other representations of things that represent your previous life, your hope for the future, and the things that keep you motivated.

       

      Examples

       

      Example #1 – Patient/supporter

       

    • My name is Dinah and I’m an ME/CFS patient and OMF supporter.

    • A recent day in my life when OMF’s work made an impact was when the study about red blood cell deformability came out, and I was able to share it widely with my friends and family to help them understand the real biological dysfunction caused by this disease.

    • Before I got sick, I used to run every day and compete in races almost every weekend. Running is one of the things I’m most looking forward to doing again. ● One thing that happened this year that really made me feel like we’re building momentum to end ME/CFS was finding out that OMF had opened a new Computational Analysis center at Harvard!

    • Let’s end ME/CFS and related diseases together. Please visit www.omf.ngo/MayMomentum2022 to find out more. Thank you!

       

      Example #2 – Patient volunteer

       

    • My name is Henry and I’m an OMF volunteer.

    • On an average day, I can’t work very much, but I always spend whatever time I can helping translate OMF’s news into Spanish. It feels good to know that I’m contributing to the work and helping out other patients.

    • Before I got sick, a normal day for me would include working, exercise, and spending time with friends. I’m most looking forward to being able to go hiking with my girlfriend. I’ve never had the chance to do any outdoor activities with her.

    • One thing that happened this year that really made me feel like we’re building momentum to end ME/CFS was watching the Community Symposium and hearing how much the research had advanced in just a single year. I can’t wait to see what will be discovered in the coming year.

    • Let’s #endMECFS together. Please visit www.omf.ngo/MayMomentum2022 to find out more. Thank you!

 

*Please submit by May 31, 2022

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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