The Warrior Collective

11/29/2022

https://www.flipcause.com/secure/cause_pdetails/MTI5Mzkx

OUR FIRST EVER GIVING TUESDAY!

11/29/2022

https://www.flipcause.com/secure/cause_pdetails/MTI5Mzkx

11/28/2022

Baby steps, they said.

Slow and steady, they said.

Well, now it is time to show you THIS:
www.TheWarriorCollective.org

The Warrior Collective is a non-profit company dedicated to lifting the burden of rare disease life.

11/28/2022

When someone gets you… it means the WORLD!

09/18/2022

Today is a great day to say “Thank You”. Yep, Thank You to the hospital and amazing clinicians that were pivotal in diagnosing our Luke and getting him rocking and rolling on treatment!

I am running for Maria Fareri Childrens Hospital. It has been in this campus that I have walked, and walked, and walked, for countless hours while Luke was inpatient or in surgery for diagnosis and treatment of his Gaucher Disease and the complications related to his rare condition. This campus brin...

03/01/2022

Six years ago today, we were muddling through the hardest month of our lives as a family. Luke had been diagnosed with Gaucher Disease and had gotten his first port placed. He had even received his first infusion. We were learning about Gaucher Disease and what life would be like for our little guy.

It has been a LONG road, but here we are! We are in a place where we can think about giving back, paying it forward, and doing our part to improve the quality of life of those living with rare diseases. This gives us hope.

Yes, we still have hard days. We still wonder if we are navigating life as best as we can for Luke. We still get frustrated with his chronic pain and we still cry when things seem hopeless and too hard.

We have also had a TON of victories! We have hand-picked a stellar team of doctors from 4 different health networks that care for Luke, we can communicate confidently with healthcare organizations and providers, we know what to ask for, we know what labs are best for testing, we know what pharmacy we can rely on, we have a home infusion nurse who is detailed and precise, we have a network of friends and family who are there to help us and have fun with us, and we have our faith which brings such hope and peace into our home and hearts. We are getting good at this rare disease/medical stuff!

The Warrior Collective is already making moves. We have sent our first gifts out to recipients near and far. Soon, our website will launch and you can log on to nominate a Rare Disease Warrior that could use a little sunshine in their life. Stay tuned, and as you end this Rare Disease Day, pray for the 300 million people in the world living with a rare disease. Pray for their caregivers and families. Pray for their physicians and clinicians. Then make a donation, however big or small to The Warrior Collective.

02/15/2022

The Warrior Collective now has the SILVER SEAL OF TRANSPARENCY from Candid and Guidestar! This means that we continue to grow our credibility in the non-profit world. Look for us on Amazon Smile and Facebook for ways to donate!

05/25/2021

Living with a rare disease often means fighting to get the SAME treatments & medication approved year after year - even if your diagnosis never changes. Insurance companies often deny coverage on a knee-jerk response, not for any valid or logical reason other than cost.

After another round of knee-jerk refusals to treat Luke at home, we have another 52 weeks approved. 🥳

This process and insurance appeals cause stress and worry, confusion and frustration. Without the support we have from friends and family during our son's journey, we'd be shells of ourselves.

How can the Warrior Collective help you socially, emotionally or spiritually as you live with your rare disease?

07/19/2020

It's OFFICIAL!!!!!

07/05/2020

We have our EIN and awaiting non-profit approval from the IRS..

06/27/2020

Empowering Luke to care for himself... One step at a time!