Evan's Army - The Big E that COULD

04/06/2026

Guess what????? That's what.... This is me, E's mom. I have been a freaking mess trying to keep our sons alive. No joke lol. They each have given me a different need for education. E is in remission from SJIA, Still's Disease ♡. His onset was at 10. He was refractory, meaning very difficult to treat. He presented with a cytokine storm, MAS, macrophage activation syndrome. It is deadly. Back to now, Mom (me), 52, is presenting with recurrent pericarditis. Same inflammation, same cytokines, my interventional cardiologist told us. Wow! I too am experiencing cytokine disturbance. I'm Mayo-bound tomorrow. This is everything that I had made a damn fool of myself for. Kids are worth it. I had no clue that I was fighting a dragon too!

03/09/2026

*"Oh the Places We'll Go!" Join the fun virtually or in-person! Our annual event registration is up and running - Purple Playas Par-Tee, Golf, & Helicopter Drop at
https://purpleplayasfoundation.org/golf-tournament/
(Click on One-Stop-Shop)

VIRTUAL HAPPENINGS:
*Helicopter Golf Ball Drop, $10 a ball for a chance to win $1,000 (only 1,000 balls sold), May 4, 9AM, live on FB with Vertical Flight
* Silent Auction to open May 13, https://purpleplayasfoundation.org/golf-tournament/
(scroll to bottom of link)

IN-PERSON FUN:
*Par-Tee: Great People, Dinner, Drinks, Music, Kid Zone, Live & Silent Auction, Raffle, and more, May 15, 6PM
*Golf: Saturday, May 16, Check-in 12PM , Shotgun 1:30 PM, Awards BBQ 6PM -- Each golfer receives 2 Party Admissions, 1 Helicopter Ball (must register by May 3 to receive), a Purple Playas Gift, and Pro Shop $50 Gift Card.

WANT TO HELP?
*Volunteer behind the scenes, on prep days, at event. Sign-up at https://purpleplayasfoundation.ejoinme.org/volunteer26

*Donate auction items, funds, basket-making supplies. Committment form at https://purpleplayasfoundation.ejoinme.org/in-kind26

*Sponsor Us. Request Sponsorship Packet via email at ppf@purpleplayasfoundation.com or Complete our Online Registration at https://purpleplayasfoundation.ejoinme.org/registration26

07/04/2025

🔬 Patients with MCAS (Mast Cell Activation Syndrome) may experience numerous symptoms, which can significantly disrupt daily life. This activation can impact several organ systems, including the respiratory, cardiovascular, skin, gastrointestinal, musculoskeletal, and nervous systems. The graphic provides examples of potential effects associated with different MCAS mediators.

Please note: This list is not comprehensive and serves only as an example. Mast cells secrete a range of mediators that lead to numerous symptoms across various organ systems.

MCAS can be hard to diagnose. There are blood and urine tests, but these are frequently normal. The symptoms of MCAS can often be brought under control through the use of antihistamines, mast cell stabilizers, and other medications.

🩺 Dr. David Saperstein worked with a group of mast cell activation specialists, led by Dr. Lawrence Afrin to propose new diagnostic criteria to update a Diagnosis Journal first published on January 22, 2014. This journal is called Diagnosis of Mast Cell Activation Syndrome: a Global “Consensus-2”.

Visit our website to learn more about MCAS now.
https://bit.ly/LearnMoreAbout_MCAS

08/14/2024

With Center for Complex Neurology, EDS & POTS – I just got recognized as one of their top fans! 🎉

07/24/2024

07/23/2024

07/21/2024

🥄Originally crafted by Christine Miserandino, this simple yet powerful concept helps healthy individuals better understand the realities of living with a chronic illness by describing the energy output throughout the day.

Imagine your daily energy as a set of spoons – each activity consumes a spoon. 🥄✨ Listen to your body, pace yourself, and estimate your 'spoon budget' for activities. Consider this: tackling common tasks might consume around 12 spoons a day. However, for some, spending 12 spoons in a day might leave them running low the next. 𝐇𝐨𝐰 𝐝𝐨 𝐲𝐨𝐮 𝐦𝐚𝐧𝐚𝐠𝐞 𝐲𝐨𝐮𝐫 𝐬𝐩𝐨𝐨𝐧𝐬? 𝐒𝐡𝐚𝐫𝐞 𝐲𝐨𝐮𝐫 𝐬𝐭𝐫𝐚𝐭𝐞𝐠𝐢𝐞𝐬 𝐢𝐧 𝐭𝐡𝐞 𝐜𝐨𝐦𝐦𝐞𝐧𝐭𝐬!

07/21/2024

The spark that is inside of you could hold answers for autism. Join the largest study of autism ever. Help us understand autism and improve lives.

07/21/2024

07/20/2024

Just a thought. 💙