March 2020     

Coronavirus and IBD 

We know that this is a challenging time for everyone, and we want to assure you that we are doing everything we can to address the coronavirus (COVID-19) and its impact on the IBD community. Your health and safety are our top priorities.

We are continually updating the patient guidance on our website, based on the latest information from our education committees, which are part of our standing National Scientific Advisory Committee, as well as many other organizations and health leaders. We are striving to understand – and share rapidly with you – the specific implications for IBD patients. You can find guidance around IBD medications, travel, and pediatric issues by visiting http://bit.ly/2voVtRC

Spring is a busy season for the Foundation, with lots of events happening nationwide. However, to protect our community, we will be implementing social distancing techniques and we will not hold any large in-person events between now and April 15, 2020. Most will be rescheduled to a later date or moved to an online experience. Some will be cancelled.

We will be keeping all our Take Steps walk dates during this period, but we will move the experience online. For Team Challenge participants, we are working closely with our event partners. If the event organizers cancel the event, we will be honoring participant registrations and fundraising for a later event. Please check our website for updates on events in your community, and reach out to your local chapter for more information: http://bit.ly/2Q9AZmU

Please know that we are here for you. If you have any questions about COVID-19 and IBD, or IBD in general, you can reach out to our IBD Help Center at info@crohnscolitisfoundation.org or 888MYGUTPAIN.

We are also hosting an Instagram event and a Facebook Live event.  (More to be scheduled soon, you can always find the current listing on the top of this page.)  Here are the ones that are now on our schedule: 

• Mindfulness lunch break:   March 27 at 12 p.m. ET on Instagram, with Dr. Megan Riehl, a GI health psychologist. For those living with IBD, stress and anxiety can be a part of everyday life, and at this time, the COVID-19 pandemic has added an additional layer of concern. It’s important to find coping mechanisms to help reduce stress during these challenging times.  We’ll be discussing mindfulness and how it can help improve your overall quality of life, and Dr. Riehl will also lead us in a brief guided mindfulness exercise. (Watch live on our Instagram Story)
• The mental and emotional impact of the coronavirus on Facebook Live, Tuesday, March 31 at 8pm ET with Dr. Tiffany Taft, a psychogastroenterologist at Northwestern Medicine and IBD patients Tina Aswani Omprakash and Amber Tresca.

We are continuing to post frequent updates on the latest information on COVID-19 and IBD.  This section has been well received by both the patient and the healthcare community, and has recently been updated with a new page on mental health: Coping with the stress and anxiety of coronavirus, and will very soon be accompanied by a page focused on helping caregivers manage the stress and anxiety their children and teens may be experiencing. 

 Las Vegas Support Groups  

Following CDC guidance, the current recommendation is that people maintain social distancing. As a result of that advice, we are working on a virtual option. When we have more information, we will share it with you.  Thank you for your patience as we continue to work through these challenging times.

For more information, please contact lasvegas@crohnscolitisfoundation.org or 702.680.0036. 

2020 Las Vegas Take Steps VIRTUAL Walk     

Important Date: April 1, 2020
Take Steps Team & Family Hour | 5:00PM | Virtual Meeting | https://edgenuity.zoom.us/j/815935758
RSVP Here

Thank you for your involvement in Las Vegas Take Steps, and your continued dedication to our collective mission. We are extremely grateful for all that you do. In light of CDC guidelines, we will not be hosting our walk at Sunset Park on May 30, 2020. Instead we’re excited to host a national Take Steps virtual walk experience on Saturday, June 20, 2020 to give our whole community a safe way to come together and honor our patients and caregivers while we continue to raise funds for cures. While this is a necessary precaution, the idea of our national Take Steps community coming together during this difficult time is inspirational to us, and we hope you agree.

For the most up to date details, please RSVP to our EVENT, “Like” our Take Steps Facebook page, and “Like” our CHAPTER PAGE Facebook page. We’ll be sharing information in real time as we announce decisions.

The health and safety of IBD patients and caregivers is our top priority during the COVID-19 pandemic. The Foundation has set up a page for IBD patients to get the best information from credible sources. We invite you to explore this helpful resource and hope everyone is staying well! 

We sincerely hope that you will consider maintaining – or even increasing – your commitment to fundraising for Las Vegas Take Steps and supporting our IBD community. Our Las Vegas Take Steps goal is shy of $3,900 - we still have a lot more work to do! IBD doesn’t take a break and unfortunately, is often exacerbated for our patients during times of stress. This is why we remain committed to fulfilling our mission in every way possible including finding a cure.

Here’s a reminder of all the tools we offer to support your virtual fundraising:

• Facebook Fundraiser: connect your fundraising page directly to Facebook through your Fundraising Center! Money raised through your Facebook Fundraiser will be reflected on your fundraising page. Participants who use Facebook Fundraisers raise, on average, 7 times more than those who don’t. Learn more here.
• Email: send solicitation emails to your network sharing why you Take Steps and your donation link. Your Fundraising Center has email templates to help get you started!
• App: download the Take Steps App for Apple or Android to send messages, post to your favorite social site, and emailing your friends from your phone’s address book. 

With our Take Steps Walk, we aim to accomplish three things... provide a community for IBD patients and families to come to goether and find strength in numbers, builde awareness for IBD in the broader Las Vegas community and fundraise to ensure that research and programs continue to support our patients. We believe we can do that virtually with your commitment and help! Register Today!

March Madness continues and it’s crazier than ever this year! It is Week 2 of our competition and time to show your team’s support of Take Steps by visiting our Facebook event page https://www.facebook.com/events/1089469294763664/.  Once there, let us know you will join our Virtual Take Steps Walk!  All you need to do is click the “Interested” button and select “Going”.  Get your team members to join as well and post a comment to let us know you are all there! Don't forget! You can fundraise using Facebook too! http://online.crohnscolitisfoundation.org/site/DocServer/Facebook_Fundraising_Guide.pdf?docID=34957

As a reminder, there are three weeks of competition. Check your email next Monday for details of the last competition. At the end of the competition, only one champion team will be announced by 5pm on April 8. Since we will NOT see everyone in person at Sunset Park this year, we will update the prize package and reveal it along with the winner on April 8th. 

Keep your eyes open for another email next Monday for details regarding Round 3. The winner after 3 rounds will be eligible for a grand prize! Below are more information regarding March Madness.  

Now more than ever, it is critical to raise funds to help find cures for 3,000,000 IBD patients! WE ARE ALL IN THIS TOGETHER - Let's reach our goal of $73,000. 

 Meet our Honored Hero, Hannah Grauso   

Hannah is a warrior. She has battled inflammatory bowel disease since just two years old when she was diagnosed with ulcerative colitis. After about 4 weeks in the hospital following her initial diagnosis, she was in remission for about 4 years. Then the medicines stopped working and new medicines were not working so we explored surgery. She had her entire colon removed at UCLA when she was 8. Even though her colon was removed (and we thought the disease was removed), she consistently dealt with issues and side effects from the procedure.   

About 6 years after her surgery she started suffering quite a bit. Her doctor recommended putting her on antibiotics once a month to ease symptoms which worked initially. Eventually the symptoms were not letting up, so her doctor completed a complete scope which resulted in a diagnosis of Crohn’s disease! This was in November 2018 when she was 15 ½. The diagnosis was not easy, in fact, it was really hard on the entire family. She had the courage to make a lot of changes which included dietary changes by cutting gluten and sugar out of her diet. She started Humira in late 2018 and that seemed to also help her. 

While she has an amazing soul and fight in her she gets down from time to time. She wonders why she can’t have a day in her life without this disease; the frequent bathrooms trips, the upset stomach, and lack of energy all get very wearing on her. However, she still finds the time to have a full load of classes at school (most AP and Honors), she is part of student counsel, and she volunteers at St. Rose Hospital once a week for a few hours. She does the volunteer work because she eventually wants to go into the medical field, and she knows she will have the compassion patients need as she has been a patient for most of her life. She wants to share her story and help others feel comfortable about sharing their experiences with this disease. She feels no one should be embarrassed about the disease and that through promoting education and awareness that she can have a positive influence on other patients in our community. 

Thank you to our current National and Local sponsors:  

Camp Oasis 2020 Registration is Open 

To Our Camp Oasis Community:  

We’re writing to share an update with you about 2020 Camp Oasis and the precautions we’re taking to ensure the health and safety of our campers, staff and volunteers. We know this is a challenging time for everyone and want to assure you that we are monitoring the situation and discussing contingency plans daily.

Based on the guidance we’ve reviewed to date, here are the actions we are taking:

• Our camps scheduled June - August are continuing to proceed as planned, with daily reviews of this decision.
• We are actively working with our National Camp Oasis Advisory Committee and medical leadership from each camp location to enhance pre-camp procedures and screening protocols, as well as onsite policies, to ensure the safest possible environment at camp.
• We are exploring a variety of alternatives and options, in the event we determine that physically gathering together this summer will not be possible.

As we prepare contingency plans, we would like your feedback on a brief, three question survey: https://www.surveymonkey.com/r/2020CampOasisFeedback

Your feedback is important so please take a minute to click the link and respond.

Please be assured that the Foundation is continually monitoring a variety of sources and perspectives to inform our decisions and guidance, including Centers for Disease Control, local health agencies, activities of other community organizations, hospital policies, our National Scientific Advisory Committee, as well as the recent International Organization of IBD (IOIBD) recommendations.

We use this information to regularly update the patient guidance on our website. If you have additional caregiver questions or concerns, please do not hesitate to contact our IBD Help Center with your questions. You can call 1-888-MY GUT PAIN (1-888-694-8872) or email info@crohnscolitisfoundation.org to ask your personal questions and get a response from a knowledgeable, caring specialist. (Available live Monday-Friday, 9am-5pm Eastern time.)

Wishing our campers and their families the best in these challenging times. Please take care of yourselves, and others.

Camp Oasis of California

Tues., June 16th - Sun., June 21st
Camp Ronald McDonald for Good Times - Mountain Center, CA
Campers: entering grades 3-10 in fall 2020
Leaders in Training (LIT): entering grades 11-12 in fall 2020
Deadline for camper applications is May 8th

Any child with medically stable Crohn's disease or ulcerative colitis is invited to apply.

Interested in Volunteering? Volunteers must read the qualifications, responsibilities, and functions of the position before applying; minimum age of 20 years old Apply today!  

For more information please contact rkingman@crohnscolitisfoundation.org or (646) 457-7215