COPA Syndrome Foundation

07/18/2022

Take Action on July 19: Help End Harmful Step Therapy Policies and
Urge Congress to Support the Safe Step Act
On July 19, join rare disease advocates and coalition partners across the nation in urging Congress to pass the Safe Step Act (H.R. 2163/S. 464). This bill would allow people with rare diseases to access the medications prescribed by their doctor in a safe and timely manner by prohibiting dangerous step therapy policies in private insurance plans, the pathway through which most Americans are insured.

01/28/2022

I sat down a million times to write and I just could not find the words to express the grief. Last week Wednesday January 19, 2022 took from from us Tory Bolin Meade, and my heart is broken. You came into mine and Christopher’s life and lit a fire underneath us. You decided to help us battle to raise awareness about COPA Syndrome, and battle you did. You ran all our social media for COPA Syndrome Foundation. You posted and knew all things to do and say. Forgive me when I stumble through all of this. I was talking with the pastor yesterday and I was explaining how we met. I was talking about all the things you did, which the list is long but I realized I repeated one word and the Pastor said it back to me. Tory Bolin Meade you are an Encourager. This one word wraps you up – ENCOURAGER to inspire with hope, COURAGE, or confidence. I love you and we will all miss you, my ENCOURAGER!
February 1, 1994 – January 19, 2022

08/29/2021

This isn’t a post I’ve ever wanted to make, but here we are.

If I can tell you one thing I know for sure, it’s that continuing to fight this terrible disease is the best way to honor Joey/Bobby/BB/Bolin.

06/15/2021

Please go follow this awesome organization on fb (RARE.) & Instagram () and stay tuned! 😎

Tory & Chris have been invited to share their journey on a podcast! More details coming soon.

04/22/2021

My Texas folk! Please contact your rep!

https://rareaction.org/take-action/ #/104

04/06/2020

We wanted to share this piece that one of the COPA patients wrote. Please feel free to share as we try to spread awareness of this perspective during this unprecedented time.

We’ve been preparing for this our whole lives...

I often wonder if it’s a good thing that I feel like I’ve been preparing for a pandemic my whole life. I’ve always washed my hands until they were chapped, I’ve always been afraid to be around sick people, and I’ve spent so much time in “isolation” from society. You may be thinking I am some kind of “doomsday prepper.” But no, I am just a person with virtually no immune system living during a global pandemic.
Over the last few weeks, we have all had our worlds turned upside down. Each day brings a new challenge with COVID-19. Some of us are locked inside-living in fear, while some continue to think they’re invincible. Here’s the deal, though, your choices during such a time affect all of us. And not all of us stand a fighting chance.
So what’s it like knowing that your chances of surviving COVID-19 are slim to none? Well, like I said, we’ve been training for this.. we wash our hands, stay away from sick people, etc.
However, the isolation this time is different. It’s so different. The family down the road I want to see? I can’t. Yes, even family is off limits. Let that sink in... I cannot see my family because it may cost me my life. I spend my days in the house, obsessively cleaning the floors, wondering if there’s any way COVID-19 has made it’s way into my home. I spend the days longing for social interaction. Whereas seeing a couple friends may be an option for you, it isn’t for me. Going to the drive thru is even out of the question.
You see, I have COPA syndrome, Primary Immune Deficiency, and a lot of other autoimmune diseases. I’m living with a dark cloud over my head every day. I may have been “prepared,” but the truth is, nothing could’ve prepared me for this. As I sit here and type this, my eyes fill with tears. Why? Because there’s only so much I can do. My well-being depends on strangers and their choices now. That’s scary.
So before you go out today and live your life as normal.. just think.. it’s not always just about you. I’ve been preparing my whole life, but will you protect my life?

Xoxoxo
-Am immunocompromised person living during a global pandemic

03/28/2020

Dear COPA Syndrome Patients, Families and Friends,

The COPA Syndrome Foundation is committed to each and every one of you during this COVID 19 Pandemic.
We, right along with all of you, are just watching this pandemic evolve daily. The truth is, it is very frightening!
We encourage all you to simply follow the social isolation as directed, the great hygiene you are already practicing and listen YOUR physicians.
We would love to hear from you on how you are spending these days, activities you have renewed, new interests, movie recommendations, ANYTHING!
If anyone is needing to reach out for a conversation, just let us know! This is how we want to support each other during this time.

Sincerely,
COPA SYNDROME FOUNDATION
❤️

10/04/2019

This is reality. This is the reality of having COPA disease. This is the side we don’t like to always share, but it’s our life. COPA is not a simple, easily manageable, cure-able disease. COPA affects us daily from the moment we wake up until the moment we go to bed. We are often faced with situations where we have to fight for our lives or make decisions no one should ever have to make. And unfortunately, not everyone survives this ugly disease-take my dad, for example. The truth is, having COPA really stinks and is so very hard.. but it’s not impossible. It’s not impossible because of the support of our family and friends. It is not impossible because of the doctors and researchers. And it is not impossible because of our kind supporters who walk alongside us and help us fight.
Please consider coming out this Saturday to the clay shoot (@ Westside Sporting Grounds in Katy) and help us fight.. fight for our lives.

Side Note: There will be a BBQ lunch for $10 if you would like to come join us for all of the other fun and aren’t you for shooting! We will be having live music, raffles, and a silent auction!

09/20/2019

CHECK IT OUT, YA’LL!

We have some AWESOME raffle items! You do NOT have to be present at the shoot to win, but close to Houston so it can be delivered to you.

Each item is being raffled individually.

1 card for 25.00 or 5 cards for 100.00.

Venmo, Paypal, Zelle or cash are accepted.



We HAVE to find a cure for this genetic disease. I’m tired of seeing people I love have to suffer.

Thank you to the selfless donors who have made this raffle possible!

Be sure to check us out on Twitter & Instagram!

09/18/2019

Here’s a sneak peek of some of the awesome items available Oct 5th in the silent auction!

Do you need a Christmas gift? Birthday gift? Honey I’m Sorry gift? You’ll find at the COPA Syndrome Clay Shoot Fundraiser!

Be sure to check us out on Twitter & Instragram!

09/10/2019

We would like to send out a HUGE “Thank You” to our station sponsors!

Fogarty Wealth Management, Inc.
Tracy and Jennifer Day
Beach 2 Mountain Vacation Rentals
APC Property Management
High Def Security
Ensign Natural Resources
Tom Plant
Global Coatings
Workforce Management Solutions Group, Inc.

Thank you for believing in and supporting our mission. 💙

Be sure to check us out on Twitter & Instagram! ()

09/06/2019

“LIFE IS TOO SHORT TO WAIT.”

Those of us living with know that life is absolutely too short to wait. We want to give a special shoutout to the following companies for supporting our mission & upcoming fundraiser. (Be sure to check out their businesses!)

*Smith, McDonald and Bolin Law Firm

*Proforma TaCaBu

*Custom AF Creations

*Be As You Are Personalized Gifts

*Kill’n time Kookers

*Alliance Engineers & Project Consulting

Thank you, all, for believing in our mission and immediately acting to help. Please accept our heartfelt thank you!
For more information on how to register for the upcoming clay-shoot fundraiser or how you can help support our mission, please visit www.copasyndrome.com 💙
#

Please check us out on Twitter & Instagram, too! ()

The COPA Syndrome Foundation is on a mission to discover how the COPA syndrome autoimmune disease damages the lungs, joints and other organs. Today very little is known about the disease. Our goal is to raise public awareness about this disorder and fund research and genetic testing to move forceful...

07/15/2019

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When you shop at AmazonSmile, Amazon will donate to COPA Syndrome Foundation. Support us every time you shop.

06/04/2019

Save the date! October 5th we will be holding our annual fundraiser!

05/03/2019

11/19/2018

Important news for our Rare Disease community!

The Orphan Drug Act (ODA) of 1983 is a federal law that incentivizes biopharmaceutical companies to develop drugs and biologics, know as “orphan drugs,” for individuals with rare diseases. To help the community better understand the importance and the value of the ODA, NORD released a new fact sheet here: http://ow.ly/u0cw50jJx4A

09/16/2018

We are truly excited and hope to bring awareness to COPA Syndrome, but also to rare diseases. Be the advocate!!!

Please join us in welcoming three new rare disease patient advocacy organizations to the family of NORD Member Organizations: COPA Syndrome Foundation, iSacra (www.isacra.org), and SETBP1 Society.

09/04/2018

My son who has COPA Syndrome has received his double lung transplant on Sunday August 26 2018. He is doing well and is up walking.His new lungs are providing much needed oxygen that Chris has been without since he was 12. What I wanted to say to say is that Chris donated his old lungs to research at UCSF where Dr. Shum is currently studying COPA Syndrome. We are in great hope that is will provide some insight into this devastating disease.