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Welcome to Laureen Getskow's Stepping Out to Cure Scleroderma Page!

2026 Stepping Out - Denver, CO

Thank you for visiting my personal fundraising page to support this Stepping Out to Cure Scleroderma event!

It’s that time folks. Time to kick scleroderma in the booty! So what is scleroderma? She is that narcissistic friend you never wanted. One that takes collagen to the next level! You don’t want wrinkles… done. Oh, but it will cost you. The cost? Pain, fatigue, fibrosis, hardening of your connective tissues. This will affect your organs,skin, causing gastroparisis, SIBO, interstitial lung disease, pulmonary hypertension, low immunity, loss of careers & possibly your life. There is no cure & scleroderma has the highest fatality rate of all autoimmune diseases. 

So what am I doing to kick this diseases butt? Walking for a cure with the best team ever, the Rainbow Zebras! We are relentless fighters & warriors who refuse to give up. We will fight to the death for a cure. Through the pain & uncertainty we need people like you who will stand up & fight with us. 

Is that you? Will YOU be that warrior? You might ask what price you’ll pay & what’s at stake for joining our team? The price could simply be a donation & a nice stroll in the park with the best team in the world! What is at stake? Lives! That’s what! People die in pain for a disease that needs a cure.! 

So, what’s in it for you? How about pride in knowing that your help goes towards saving lives! Meeting new friends & joining a wonderful community of relentless warriors. Join my team & get a super cool t-shirt made by yours truly. Last, a tax write off! Yes, your donation could help you stick it to the man (I have the forms 😉). But how can you help if you live out of state? Simple, click the link, make a donation or join my team virtually! 

Why Rainbow Zebras? The zebra represents rare diseases. A rainbow zebra for those of us who take things to another level & have more than one rare disease. Everyone on my team is a rainbow. Together we have Scleroderma, Raynaud’s, Sjogrens & autoimmune neutropenia. 

This narcissistic witch needs to slow her roll. Are you with us?!?! If so, please donate to help fund research for a cure. My team Marilyn, Theresa, Linda, & myself will be so grateful!🩵🦋 

Together, we can raise awareness, support those living with scleroderma, and bring us one step closer to finding a cure. Your support means so much. Donating through this site is quick, easy, and secure.

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Reach My Goal

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$2,946

My Goal

$2,500

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My Achievements

Set Up Fundraising Page

Raised $250

Raised $500

Raised $1,000

Raised $5,000

Raised $10,000

Updated Profile Pic

Added a Blog Post

Received 5 Donations

Reached Fundraising Goal

Increased Fundraising Goal

My Updates

Advocacy & new provider

Wednesday 27th May
I wanted to share a quick update on my recent experiences. I've met a new primary care doctor since my previous one retired - she was truly exceptional. This new doctor has a challenge ahead of her, but I'm optimistic about our collaboration. During our appointment, I sensed her unease in addressing my complex health situation, particularly with Scleroderma. She mentioned being unfamiliar with its intricacies, which presented an opportunity for me to educate her. I wore a shirt that read 'Scleroderma is not just skin deep' and used that as a conversation starter. She appreciated my insight and welcomed the chance to learn more. I emphasized the importance of a collaborative approach to my care and encouraged her to reach out to my specialists with any questions. Thankfully, they share the same charting system, making communication seamless. I also invited her to our Fall Educational Fair, sponsored by the National Scleroderma Foundation, which she plans on attending. As someone who strongly believes in advocacy, I encourage everyone to take an active role in their healthcare. Remember, you are an integral part of your care team and your voice matters. My new doctor thanked me for educating her, and I'm looking forward to our continued collaboration.

Next, I'm preparing for my MRCP, a specialized MRI to examine my liver and pancreatic ducts. I've had elevated liver enzymes since my procedure in July, which were attributed to complications from Scleroderma. I'm still awaiting my SIBO test results and have followed up with my GI doctor. I'm also continuing to raise funds for the scleroderma walk, where 100% of the proceeds support our local Rocky Mountain Chapter. They provide essential resources, including support groups, education fairs, and research towards a cure. If you feel inclined, please consider sponsoring me - it would mean a great deal. Love & Blessings ~ Laureen 🙂 #advocacy #scleroderma #raredisease

Clinical study & RRCT

Thursday 14th May
The feeling of being overwhelm often resonates deeply with me. Especially after last month's 15 appointments; however, I will remain steadfast in my commitment. I show up for myself, my loved ones, and others who courageously fight rare diseases. I am deeply passionate about raising awareness and funds for a cure. Recently, I had the privilege of participating in a clinical research study at National Jewish – an experience I consider a great honor. I am spearheading a project with our support group, the Rapid Response Care Team, with purpose and conviction. I made shirts for my scleroderma support group, been invited to participate in the patient panel at our local Scleroderma Education Day, and designed shirts for the providers presenting that day. I am not sharing this to draw attention to myself, but rather to inspire fellow rare disease warriors to continue fighting with hope and resilience. You, your voice, and your feelings matter. Although not everyone can relate to the challenges of living with an invisible disease, some can. I SEE YOU, and I am proud of you. 🦋🩵 

You can read my other blogs & plea on this page. Please consider sponsoring me as I walk for a cure. 

#BeautifullyRare #steppingoutforacure #rarediseaseawareness #sclerodermaawareness

SIBO & Echocardiogram

Friday 24th Apr
I have scheduled appointments for SIBO and echo tests today, marking my 12th and 13th appointments this April. SIBO, or small intestinal bacterial overgrowth, is a common condition among individuals with scleroderma-related gastrointestinal involvement. While the test itself is relatively simple, it is a lengthy process, taking 3.5 hours to complete, and requires adherence to a special diet the day prior. The echo test is conducted annually to monitor cardiac changes and potential scleroderma-related complications. My day commenced at 4:30 am, and I anticipate completion around 2:30 pm. I am currently feeling fatigued and tired. I am hopeful for favorable results, although I am uncertain about the SIBO test due to symptoms that are also common in IBS. Thank you for your ongoing support throughout my journey 🩵🦋🩵.

More appointments

Wednesday 15th Apr
After being diagnosed with a rare disease, you quickly learn that having many appointments with all kinds of specialists is a thing. This month, 13 appointments! Thats 4 infusions, 1 lab, 2 primary care, 1 mammogram, 1 GI, 1 echocardiogram, 1 hydrogen breath test, 1 hematologist, & 1 rheumatologist. It’s exhausting. The skin thickening on my chest was actually picked up on my mammogram. That was both interesting & validating. What I’m experiencing is real. Often times I hear, “well at least you look good” Well,  I want to FEEL good. I’m tired of being tired. I’m tired of being in pain. I’m tired of driving 1-1.5 hours for most of my appointments. However, I’m grateful that I have an incredible team of specialists that are knowledgeable on scleroderma. Now let’s get through the rest of the month! One day at a time, & don’t forget to breathe 🦋🩵 #BeautifullyRare  #RainbowZebra #FindACure #CollectorOfAllThingsRare

Infusion #3

Friday 10th Apr
Today is infusion #3 out of 4. We travel up to Golden, CO to get these. The hope is to slow the progression of my symptoms & improve my white blood cell count. I will repeat the 4 infusions every 6 months. These increase my risk of infection by depleting my B cells. 

Thank you to my Sponsors

$500

Arc Thrift Stores South District Austin Bluffs Store #12

$316.50

Anonymous

Hey sweetheart, wishing you the best! May you learn good things from your test that you’re having? I know it’s not really a test but you know what I mean. blessing sweet girl!

$250

Vanessa Marquez

You’re a true inspiration and fighter! Sending love - the Marquez Family

$160.56

Vonna Matheny

$107.82

Simone James

Love ya lady! 💕

$107.82

Carol Saltsgiver

Always in.my prayers

$107.82

Maria Tseng

Keep kicking Scleroderma’s butt! You are an inspiration and I’m so proud of you for being proactive and raising awareness.

$107.82

Jeannie Jones

I love you 💕😘

$107.82

Tom Osborn

You are so strong!

$106.82

Carol Gillet

Thanks, Laureen, for all you do for the Scleroderma group.

$106.82

Abby Matheny

We will keep fighting 💪🏻

$104.42

Anna

You are a fighter and I’m so proud of you! Keep it up!

$80

Laureen Hetskow

$55.66

Sheila Carroll

$55.66

Sandra Claus

Go Rainbow Zebras! Kick Scleroderma to the curb!!

$54.86

Abby Matheny

$54.46

Sharon James

Will continue to keep you up lifted in my prayers.

$50

Tyler

$50

Heather A

Thinking of you and cheering you on every step of the way. Your strength and resilience are truly inspiring. I hope this small contribution helps in some way and reminds you how many people care about you and are rooting for you. Sending love, prayers, and support. ❤️

$50

Kenneth Kuhn

Keep up the good fight!

$50

Tracie

I know this fight isn’t easy, and there are days when it feels heavier than words can hold—but what you’re doing matters more than you may ever fully see. Love you Lady and keep up the fight.

$50

Kirstin Carney

Still praying for you sister. Your ao strong

$42.96

Ryan B

$32.04

Laureen Hetskow

$28.43

A Bowen

$28.43

Lauren Jackson

$28.43

Tiffani Crawford

$27.88

Jason Gasper

Thank you for your kindness and for the goodies!

$27.88

Ashley Colborn-martinez

Here’s to finding a cure!!!!

$27.88

Justin Loa

Thank you for all the treats! we always appreciate them!

$27.88

Joa Matheny

$27.88

Eric Martinez

$11.46

Kam K

Our Team