Life's a Polyp Foundation

LAP is now Life’s a Polyp Foundation! As a 501(c)3 nonprofit organization, LAPF is delving deeper than ever before to push meaningful change for patients and their families.

Built on 4 pillars of Education, Community, Advocacy, and Research focusing on a deep dive into understanding FAP, connecting to community and clinical trials, raising public awareness, and advancing research for new treatment options.

Explore what our brand-new website has to offer and stay in touch, we will continue adding new educational materials and resources for patients, families, and providers alike.

Visit: www.lifesapolyp.org

For social media, follow on Facebook, Insta, z YouTube or TikTok @lifesapolyp

It was emotional filling out my nomination acceptance form - and you better believe mama’s front and center, I’m bringing her with me! 🥹

This will be my first advocacy trip without her - she got where she wanted to always go with me.

For you mama, with all my love ♥️

Woah!! I woke up to another donation to National Organization for Rare Disorders, Inc. (NORD) Familial Adenomatous Polyposis Research Fund!

Y’all are incredible!! Thank you for donating and supporting FAP Research for better treatments!

We’re $8 away from the 1k mark on the new campaign page 🥹

4 ways to support the FAP Research Fund:

💳 Donate: Bit.Ly/4ceBwMn

🛍️ Shop: CafePress.com/LifesaPolyp

📕 Read: Bit.Ly/Lifes-a-Polyp

We’re just $35 away from this milestone!

Let’s goooo!

4 ways to support the FAP Research Fund:

💳 Donate: Bit.Ly/4ceBwMn

🛍️ Shop: CafePress.com/LifesaPolyp

📕 Read: Bit.Ly/Lifes-a-Polyp

🔗 Share!

I love the support the rare disease community receives from National Organization for Rare Disorders, Inc. (NORD)! I can’t tell you how much they mean to me, how much support they’ve given me and my family personally. I’m extremely grateful that I chose NORD to partner with to start the Familial Adenomatous Polyposis Research Fund. 🥰🥰

If you’d like to donate to the fund, you can at

Ahhh! I was able to donate $100 to the Familial Adenomatous Polyposis Research Fund with NORD today thanks to sales from Life’s a Polyp Shop and my FAP Children’s Book!

We’re only $86 shy of the first 1k on the new fundraising platform that NORD established for us! And my team is gaining on Kevin Myers’ teams! 😉

If you’ve like to join in helping us reach the 1k mark and beyond, you can help in 3 ways:

Donate: Bit.Ly/4ceBwMn

Shop: CafePress.com/LifesaPolyp

Get your copy at https://a.co/d/6UMxwsV

What an incredible experience this has been working along side so many talented writers sharing their rare disease stories. 🫶

Thank you to everyone who donated to fund my chapter and all of our sponsors, our partner, and supporters! This wouldn’t have happened with each of you!

#PositivelyRareBook #RareDiseaseAwareness #rarediseasebooklaunch #careaboutrare #rarediseasetruth

Huge thanks to

Global Genes PTEN UK & Ireland Patient Group Erin Paterson Be Do Have Movement Apex Social Group

#PositivelyRareBook #RareDiseaseAwareness #rarediseasebooklaunch #careaboutrare #rarediseasetruth

🤩 It’s hard to believe that Positively Rare is launching in less than a week on Wednesday, November 20th!

I’ve had a really hard time participating in advocacy since losing mom in June and I wasn’t going to join the other writers in being a guest on the On One Condition Podcast but recently I felt able to.

This morning I had my interview, the first podcast I’ve done since losing mom and it felt really good! 🥰

There’s still time to sign up for the online launch of Positively Rare! It’s from 2-3pm EST on 11/20, sign up at this link and join us for a great time!

💻 https://www.bedohavemovement.com/positivelyrare

Reminder that sales from Positively Rare will help support Rare Disease Charity!

And a tremendous thank you to our partner, sponsors, publisher and supporters who have helped Positively Rare happen!!

Global Genes https://www.facebook.com/globalgenes

Apex Social https://www.facebook.com/apexsocialfamilies

Be Do Have Movement https://www.facebook.com/bedohavemovement

HD Reach https://www.facebook.com/HDReach

Erin Paterson

https://www.facebook.com/ErinPatersonAllGoodThings

PTEN UK and Ireland Patient Group

https://www.facebook.com/ptenuki/

And they were so kind to include a touching tribute to my mama 🥹🥰

Be sure to check them out to get your copy and thank you again Ostomy Canada Society for the incredible honor!

I’m excited to share my story following the beginning of my medical PTSD with rare disease and my mental health healing journey in this incredible collection of rare disease stories.

A big thanks to our charity partner, sponsors, and supporters for making this possible!

#PositivelyRareBook #RareDiseaseAwareness #rarediseasebooklaunch

It’s Ostomy Awareness Day!

With UOAA’s help, we were able to get Oklahoma’s Governor to sign the proclamation! We didn’t succeed last year so I requested it from the OKC Mayor too.

Ostomies truly are lifesaving and can greatly improve quality of life for a lot of people.

I’m really proud of it ☺️

❓So tell me! What kind of video information would you like to see more of?

I have several articles still in the works but I’ve found videos easier to do than writing since losing mama so that will likely be the main format this year as I continue to process my grief.

Some possible topics I thought of are:

✳️My port placement & experience with it so far

✳️Insurance insight particularly when looking at retirement and/or Medicare eligibility

✳️ emotional intelligence products we’ve used for adult and children

✳️ review of the resources linked on LAP

✳️ another q&a

Give me your thoughts on these topics and what else is of interest to you ♥️