Appendix Cancer on Radar: Making a Difference, Working Together

Appendix Cancer on Radar: Making a Difference, Working Together

Appendix Cancer on Radar: Making a Difference, Working Together

Amber is the official color of Appendix Cancer Awareness. It symbolizes the courage, strength, and resilience of appendix cancer patients, care partners, and their families. Working together, we aim to raise awareness among a wider community through shared messaging. Together we are stronger and louder…tog (ACPMP)ether we can make a difference!

PMP Pals, Appendix Cancer PMP Research Foundation (ACPMP), Pseudomyxoma Survivor, and CANCollaborate are united in enhancing understanding and support for patients with appendix cancer and the related condition pseudomyxoma peritonei. We’re advocating for more patient and care partner considerations, aggressive research to discover new treatments, and approval of existing, off-label uses. The goal? A cure, be it immunotherapy, chemotherapy cocktails, improved best practices, or early detection.

Join us this August as we come together to shine a light on appendix cancer and support those battling this rare and challenging disease. Here’s what you can do:

Pals Living Life: Raising Awareness of Appendix Cancer

Pals Living Life: Raising Awareness of Appendix Cancer

Each year, the Mike Weber Sr. Memorial Foundation holds its annual fundraiser at White Beeches Golf & Country Club in Haworth, NJ. Family members honor the legacy of Mike Sr., an appendix cancer survivor whose legendary impact on his local community lives on in larger-than-life ways. The foundation bearing his name, led by his wife and three children, continues to influence the rare disease space. This year, board members Dave L., Pals Lindsay Barad, and father Jim joined board member Mike Weber Jr. in raising awareness of appendix cancer and inspiring generosity in honor of Mike Sr.

“It’s an amazing event,” notes Dave L. “A true honor to a great man whose amazing legacy continues in his family and their tireless dedication to save others from this deadly disease.
I hope it continues as it has become a highlight of my summer. I played well, one away from shooting PAR, on an immaculate course, with great people. Thanks, Mike, your family, and the army of volunteers. It was a very good day, indeed!”

Over 250 people attended the golf tournament and contributed over $35,000 towards various patient and care partner groups. For more information on the Mike Weber Sr. Memorial Foundation, visit www.goteamweber.com.

 

Create a 5K Race Day Team & Team Fundraiser Page

Create a 5K Race Day Team & Team Fundraiser Page

Teams are fun! Create a 5K Race Day Team & Team Fundraiser Page

Welcome to the One In a Million 5K Run/Walk. It’s way more fun to do with friends, family, and coworkers – let’s make it a TEAM EFFORT! To be clear, you can run the race without fundraising and you can fundraise without running. We hope you will do BOTH!

We have two sets of instructions: The Easy Version and The Detailed Step-by-step. 

Photo courtesy: Sandra Gabriel, Unsplash

The Easy Create a Team Instructions

Barbie loves to walk with her friends so she is going to create a RACE DAY TEAM called The Village Sisters here: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/register

After Barbie has created The Village Sisters team, she registers and pays so she can get her bib number & t-shirt. https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/register 

Barbie is so excited to walk for PMP PALS, she wants to raise money for them too, so she creates a TEAM FUNDRAISERS PAGE called TeamBarbie here: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/campaign/new/pmp-pals-8445/0

Barbie gets all her friends to join her, so they register for the race, pay for a bib number, and select RACE DAY TEAM “The Village Sisters” when they register. Afterwards, Barbie’s friends get excited to raise money for PMP Pals too, so they sign up to be a fundraiser on TeamBarbie TEAM FUNDRAISER’S PAGE.

Barbie’s grandmother wants to donate to Barbie’s efforts but doesn’t want to walk or get a bib number. So she visits the Team Master Page, selects the TeamBarbie tile, and makes a donation to Barbie’s personal fundraising page “Barbie Doll” from the dropdown menu. Grandma’s donation is reflected in Barbie’s personal fundraising total and the TeamBarbie total. https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/charity/charity/pmp-pals-8445

Ken wants to walk with Barbie because he’ll follow her anywhere. So he registers for The Village Sisters RACE DAY Team to get his bib number. He will fundraise too because Barbie told him to, so Ken sets up his personal fundraiser page here and be part of TeamBarbie: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/campaign/new/pmp-pals-8445/0

Ken’s best friend Allan will walk, but only for one mile in Alaska where he lives, and he doesn’t want to fundraise. Allan registers as a VIRTUAL participant, joins The Village Sisters too like everyone else, and then goes to this page: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/charity/charity/pmp-pals-8445  and click’s on the “Donate TeamBarbie” tile and selects Fundraiser “Ken Doll” from the dropdown menu to help Ken fundraise.

Lastly, Ken’s employer wants to sponsor the event and support Barbie & Ken, so Lifeguards-R-Us clicks here: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/sponsor

Having trouble? Email us at tara@pmppals.net

The Detailed Step-by-step Create a Team Instructions

In order to participate, you will need to

  1. register for the race, pay your registration fee to get a bib number ($40 until 8/14), and enlist on a RACE DAY TEAM
  2. once registered, you decide to participate with a TEAM FUNDRAISERS PAGE. (You can also create your individual fundraising page too as part of this effort.)
  3. Participants who want to register as Race Day Teams and/or Team Fundraisers’ Page must complete THESE STEPS.

STEP 1: Decide who your Team Captain will be.

This person will create the RACE DAY TEAM that all team members will select thereafter, when they register for the race to get a bib number. The Team Captain will also create a TEAM FUNDRAISERS PAGE Page that teammates can use to fundraise with a dedicated team donation link.

STEP 2: Create your Race Day Team & register for your race bib

Team Captains should register first and set up the RACE DAY TEAM
1. Set up a Team Name with the RACE REGISTRATION Page.
Visit https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/register
Click the “5K” radio button
A BLUE Button will appear: Click to “Create/Join Team” then “Register as Team Captain” – this adds field “Team Name.”

Complete all the fields to register as Team Captain; click “Continue.”
Complete the rest of the form and check the box to accept/agree to the waivers and initial

Click “Continue” if you are not registering other race team members.

If you are registering other race team members with the same credit card, select the GREEN BUTTON  “Add Another.” Now is the time to add 5 or more teammates to receive the 10% discount and pay with one credit card. You will be prompted to enter a “Team Name.” Continue to “Add Another” until all registrants are added. Click the BLUE BUTTON “Continue.”

The next page will ask if you want to make a Donation to the Charity – this is not the Team Fundraisers’ Page. This is simply an opportunity to donate additional money to the cause. Click the BLUE BUTTON to continue without donating by clicking the BLUE BUTTON ‘Continue without Donating” or make a donation to help defray race expenses then )click the BLUE BUTTON “Continue to Checkout.”

Complete your billing and credit card info and click the BLUE BUTTON “Register”.
You now have a RACE DAY TEAM registered. You are officially registered and will receive a bib number, t-shirt, and finisher medal. You will receive a confirmation email shortly.

PLEASE COMPLETE THE RACE DAY REGISTRATION PAYMENT BEFORE MOVING ON.

STEP3: Setting up a Team Fundraiser Page

We suggest creating a Team Fundraisers Page (see below) and asking family, friends, coworkers, and other to give to your TEAM FUNDRAISERS PAGE — it’s more fun and inspirational!

Set up a TEAM FUNDRAISERS PAGE here:
https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/campaign/new/pmp-pals-8445/0

This is strictly for creating a Page to use to get others to donate to their race effort.
Setting up a Fundraiser Team Page is just that. Once a team is set up, you need to register for the race day or virtual run/walk. The Team has a fundraising page and each racer can have their own individual fundraising page associated with & that contributes to the Team Fundraiser Page total.

Now the TEAM CAPTAIN can set up a FUNDRAISING TEAM.
Visit https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/campaign/new/pmp-pals-8445/0
Complete the form fields as directed. You can use the same Team Name that you used to register for the race or call your Team Fundraiser Page something different.
Upload a team logo or team image.
Upload an individual Profile image (to identify you personally).
In the “About You” section, write why you are raising funds for PMP Pals and appendix cancer.
Click the BLUE BUTTON CREATE FUNDRAISER
Your Team Fundraising Page will pop up. Write down this URL and share it with others and have them click the BLUE BUTTON “Fundraise” to donate to the Team Fundraisers’ Page.

If you want someone to donate to your team fundraiser, send them to this URL:
https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/charity/charity/pmp-pals-8445
and have them select the BLUE BUTTON on your Team Fundraisers Page. This takes them to a donation form where they can also select a team member’s individual fundraising page.

Then go to the Team page and add yourself as a fundraiser and add yourself to the TEAM FUNDRAISER PAGE. See this example: https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/campaign/join/pmp-pals-8445/7886

SHORTCUT TO MASTER PAGE OF ALL TEAM FUNDRAISERS PAGES
Check out this example to better understand how it works:
https://solerssports.raceentry.com/races/one-in-a-million-5k-runwalk/2024/fundraising/charity/charity/pmp-pals-8445
Scroll down & select your Team tile to donate to the team, and select a team member to support.
If you have friends who want to join your RACE DAY TEAM but do not want to fundraise individually, but they do want to donate and support PMP Pals programs, they can do so here and attribute their donation to the Your Team in the dropdown menu.

Having trouble? Email info@pmppals.net and we’ll get you started.

Resource Roundup: Summer 2024

Resource Roundup: Summer 2024

We’re always scanning medical journals, practitioner magazines, cancer-focused blogs, and our partner websites for resources about this rare disease. Depending on where you are on your appendix cancer journey, you may be searching for information about current treatment practices, recovering well, and technology advancements showing promise in 2, 5, or 10 years. Be sure to check the footnotes references at the end of every reading. Here’s what we turned up this past week that may be of interest to you:

UPyTher aims to make peritoneal cancer treatable with a chemogel, company website, 6 July 2024

The impact of stage, grade, and mucinous histology on the efficacy of systemic chemotherapy in adenocarcinomas of the appendix: Analysis of the National Cancer Data Base, Various physicians, first published: 27 October 2015

Effective Cancer Pain Management Key to Maximizing Mobility in Cancer Patients, Oncology Nurse Advisor, 8 July 2024

Drug Shortages Still Affecting US Cancer Centers, Survey ShowsOncology Nurse Advisor, 8 July 2024

Setting Our Minds Straight

Setting Our Minds Straight

We don’t necessarily need a designated month to remind us how important emotional resilience is to our quality of life. Keeping a clear mental perspective affects our overall wellness, as well as our relationships with family and friends. But, it can be hard to navigate the day-to-day with a rare cancer diagnosis that, on all accounts to others, is over…right? People ask: You had your appendix out, and the cancer’s gone, right? So, you’re cured, right?

Learning how to juggle anger, frustration, confusion, and despair with gratitude, happiness, and HOPE are part of our daily paradigm. But, we don’t have to go it alone. That’s why we log in to HOPE Zoom every so often, to check in with our tribe, those who understand what it’s like to live beyond an appendix cancer diagnosis. Here are a few tools to add to your mental health toolbox, compliments of Mental Health America:

The National Organization of Rare Disorders (NORD) also has a local resources state directory of various health services you can search.

Lastly, don’t underestimate the value of talking with a mental health professional. Talk with your physician or medical team about securing time with a clinician specialized in long-term illness and cancer survivorship. Conversation is just one tool we have to build the emotional resilience we need to go the distance with appendix cancer. Let’s have those talks year-round.

Open the Mental Health Toolbox