Category Archives: Crohn’s Disease

Upcoming events around Detroit for Crohn’s and Colitis

More good things are happening in the digestive health world, thanks in no small part to social networks connecting the people who care about them the most. Those fighters keep the movement toward awareness going forward; and awareness leads to early detection and ultimately, prevention!

Here are some upcoming events to get involved in the fight against colon cancer, crohn’s disease and ulcerative colitis.

Mix and Mingle at Royal Oak’s HopCat

The Michigan chapter of the Crohn’s & Colitis Foundation of America are looking for new members to get involved. And what better what to do that than over beer? Head to HopCat in Royal Oak on Feb. 26 for a meet ‘n’ greet or to mix ‘n’ mingle with other young professionals in the area.

“Join us for Mingle Monday on February 26th at HopCat in Royal Oak starting at 6pm. Come meet other local professionals, learn more about the committee and brainstorm ways to make this year’s YP Committee even better. For more information about the YP Committee and to RSVP contact Kiel Porter at kporter@crohnscolitisfoundation.org or 248-737-0900 ext.4.”

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Camp Oasis Reunion at the Outdoor Adventure Center Detroit

Pizza and interactive exhibits make this event a must-attend. Free to past campers and only $5 for additional family members, this reunion gives you the chance to reconnect or if you’re new, the chance to get to know your new crew.

Third Annual Patient-2-Patient Education Project

This exciting event on March 21 is a FREE educational event for folks with various forms of IBD and their families.

“We have an exciting panel of guest speakers that will be pairing with expert IBD physicians, nutritionists, psychologists, and other healthcare professionals to discuss everyday IBD issues.”

You can even request the topics you want the panel to discuss beforehand. Get the rest of the details and RSVP through the Facebook page.

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Get inspired! Crohn’s fighters share what works for them

Inspiration comes from everywhere and anywhere. We think the folks out there, fighting every day with with IBD, are among some of the most inspiring. That’s why we love to share their stories!

Kristina Krstev‎

“It has been 8 months since I changed to a pescatarian lifestyle…and I want to share my story. In May 2017 I was again in and out of the hospital due to my Crohn’s disease. Taking 14 different medications a day plus daily steroids to help…yet they never did.

Image may contain: 2 people, people smiling, closeup“I was sitting at home after another expensive doctor appointment where I was told the next med would be a biological drug. The first side effect listed was ovarian cancer. I was terrified. A day later I was flipping thru stuff and ran across a ted talk about a man who had Crohn’s disease. Like me he was in pain daily and slowing losing the fight. He talked about how he changed to a vegetarian diet, and the way it changed his life. After a year they could not find the disease in his body. I was in disbelief. How could diet do all that?

“After I did research I began to get angry. Not with my disease anymore, but that after 10 years not one single specialist or doctor told me anything about how this could impact my life. I decided that I would try a pescatarian diet. After two weeks my symptoms declined and at three weeks they were gone. No more meds and no more steroids that made everything in my body hurt daily.

“I did not start this as an animal rights activist, and I’m still not. It’s more about what’s IN meat and diary that terrifies me now. The genetically enhanced food, antibiotics and so much more that are put into the animals we are supposed to consume from factory farms. We are disconnected from our food. We don’t hunt our food anymore and know that it came straight from the outdoors and was clean to eat. We walk into a well stocked grocery store and put our trust in multi million dollar industry’s who want more money from us.

“This is my story. You don’t have to agree with me, but I wanted to share it in the hope that it may help someone else as it did me. I am 7 1/2 months free from meds, and down 45 pounds. I don’t hurt everyday. I don’t worry about my disease ruining yet another experience I wanted to enjoy. I am free. I am healthy.”

Kayleigh Thompson

Image may contain: 3 people, people smiling, people standing and indoor“I was diagnosed with ulcerative colitis. The biggest issue I’ve come across is with other people judging in a sense I don’t appear to look unwell or ‘she not that bad’. What they don’t see is our day to day lives can be filled with pain, stress, embarrassment too name a few. I’m still finding it hard to find the right coping mechanisms and the amount of doctors trips and medications I am fed have sometimes pushed me to my limits. Recently being able too to talk about my illness and raise awareness to others does help me come to terms with everything. Every day is a new day, a new challenge and you should never judge a book by its cover.”

Nicole Waddell‎

“I was diagnosed at the age of 17 in 2004. I have had Crohn’s Disease for 13 years now. I have a rare case of Crohn’s disease (IBD). It is important not to confuse an inflammatory bowel disease (IBD) like Crohn’s disease or ulcerative colitis with irritable bowel syndrome (IBS). IBS is a disorder that affects the muscle contractions of the bowel and is not characterized by intestinal inflammation, nor is it a chronic disease. Most patients have it affect the Ilium of their intestinal tract, but when I was diagnosed mine was covering my whole GI tract. 

Image may contain: 4 people, people smiling, people standing“I was in so much denial of my new disease that I didn’t do what I was told and I became so sick I had to drop out of my 1st semester of college and move back home with my parents. I was devastated, depressed and full of anxiety of not knowing what would happen to me mentally or physically.

“I went physically anorexic due to not eating because the Crohns would give me horrible stomach cramps. I also had body pains, fatigue, depression, anxiety, & frequent diarrhea.
Over the years I have done many many rounds of max steroid doses. I have tired almost every biologic on the market. I now take a daily chemo drug as well as a high dose biologic every 6 weeks. I still have my intestines and colon. I am checked every year for esophageal, stomach, intestinal and colon cancer. Which I am at high risk for getting.

“I have had two kids through all this pain disease body and I wouldn’t change a thing for taking that chance. They are my biggest blessing! I love my little family of four! I might be out number and never getting to have a baby girl but I wouldn’t change it at all these boys melt my heart.
I would like to thank my family and most of all my husband for going through all the doctors visits, hospital visit and specially visits. I don’t have a cure for this lifetime disease yet but maybe one day we will find something close.

“Crohn’s doesn’t just affect you GI Tract. It causes you to have secondary problems as you go through the years of being diagnosed. I have had some crazy stuff happen to me over the years and I know there are more to come. I wish I didn’t have arthritis at the age of 30, but I do. I have mild eczema, dry eyes, anemia, fertility problems and have had some crazy skin problems over the years.

“I want you to know that although Crohn’s has already taken so much from me, that it will never steal who I am. Living with Crohn’s disease, you learn to love in the mindset that you have control of very little of the life you live in. The drugs and diet control you. I try my best every day so I don’t feel or act like it is stealing any more from me than it has already.
I am blessed I am still here to enjoy life with my family and friends. Please spread the word and share the commonly hidden invisible disease. Thank you and god bless! ”

Thank you to you brave survivors and thrivers out there for sharing your stories!

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Good things happening for Crohn’s, Colitis and IBD

Things are happening all around us thanks to our survivors, fighters, caregivers and advocates making a difference for folks with Crohn’s, Ulcerative Colitis and other forms of IBD.

We thought we’d focus on the good things happening in the digestive health world and the progress we’re making.

Dawn, Stage IV SurvivorImage may contain: 1 person, smiling, outdoor and closeup

“After fifteen years of symptoms and few answers, Dawn received a grim diagnosis: stage IV colorectal cancer at age 36. Yet she fought and became, as she says, the ‘luckiest of the unlucky’—a survivor. Today Dawn joins us in fighting to ensure other young people and doctors don’t miss the symptoms of young-onset colorectal cancer, advocating for awareness through our Never Too Young Advisory Board. The board is made possible by our amazing supporters, including those who give by shopping through our Amazon Smile page: http://smile.amazon.com/ch/86-0947831.”

 

Updates from the Michigan Chapter of Crohn’s and Colitis Foundation

IBD Awareness Breakfast in Traverse CityImage may contain: 7 people, people smiling, people sitting

“During Crohn’s & Colitis Awareness week, the Michigan Chapter staff, volunteers and Dr. Peter Higgins participated in an awareness breakfast about IBD. Many thanks to Representatives Alexander and Love for their sponsorship of the Awareness Week proclamation and to the legislators that took time out of their day to visit. And of course none of this would have been possible without the support of our families from the Lansing area and Traverse City. Thank you for your time that day!”

Webinars

“Couldn’t join us for our IBD Awareness Week Educational Webinars? You can now watch the recordings online. Topics include: Diet & Nutrition; Stress Management; IBD Wellness; and Disability Accommodations. Watch them here:http://bit.ly/2jyyKg0

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The Fight for Step Therapy by Crohn’s and Colitis Foundation

Image may contain: 2 people, people smiling, suit“We’re in Boston today testifying in support of step therapy reform in Massachusetts! Thank you to the IBD patients and physicians who are bravely telling lawmakers how the insurer practice of step therapy, or “fail first,” puts patient care on the back burner while insurance companies reap extra profits. Their powerful stories of debilitating physical, mental, and financial health will hopefully encourage legislators to pass S.551 and H.492.

“Interested in becoming an advocate in locally or nationally? Sign up for our Advocacy Network:http://bit.ly/2C4yc4Q

Keep up the good work, and thank you for continuing the fight!

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Infusion Center FAQ: Discover new treatments

Did you know that the Center for Digestive Health has an Infusion Center? Do you know what our Infusion Center can do for you? If you answered “no” to one or both of those questions, you’re not alone.  

We asked Janice Walker, RN, BSN, and new manager of our Infusion Center, to answer some FAQs to better explain how the Center works, what it offers, and how you might benefit.

Do I just sit there during my treatment?

“Our infusion center provides comfortable recliners, pillows, light refreshments, magazines and a wide variety of DVDs to go with our portable player. Patients can bring in their own laptop, tablet, book or craft, and some just bring a blanket and enjoy the opportunity to rest.”

What medications do you provide?

“The Infusion Center administers intravenous medications including Remicade, Entyvio, Stelara, Ferrlecit (Iron) and fluids to patients suffering from Crohn’s, Colitis, Iron Deficient Anemia and Dehydration. We also administer B12 injections and TB tests. There’s also an on-site lab that allows patients to use us as a ‘one-stop shop.’”

Who administers the treatment?

“We have a great team of highly experienced nurses with a variety of medical backgrounds. In addition to administering the infusions, they monitor and coordinate the patient’s lab work, TB test, doctor’s visits and keeps their prescription up to date.”

What happens if I don’t react well to the infusion?

“During the patient’s visit the nurse is responsible for starting the IV, calculating and preparing the medication, administering the medication and monitoring the patient throughout the infusion. In the rare event of an adverse reaction, we always have a physician, nurse practitioner or physician’s assistant on hand to provide a rapid assessment and treatment.”

How do the appointments work?

“Patients make their next appointment when they are here for their infusion, anywhere from 6-8 weeks in advance. Due to the complex nature of the medication, we do not offer ‘walk-in’ appointments.”

How can I expect to feel afterward?

“Most of our patients feel great after their infusion. Often times, because it is a cyclical medication, they can tell when they are due and look forward to their appointment. Most of our patients either go back to work or go back to their other responsibilities as they would any day. A small number of our patients report feeling tired for the remainder of the day, but they tell me it’s nothing compared to how they feel when they don’t get their medication.”

What are my options if I can’t make it during your office hours?

“We offer evening hours to help our patients who may be unable to come in during standard business hours. We have opened a second Infusion area at our Unasource office to offer our patients a better selection of appointment times as well as the possibility of receiving their infusion closer to home or work.”

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Find support with these upcoming IBD events

No automatic alt text available.Finding support with folks going through the same things as you can sometimes be what gets you through a tough day. Here we have a list of upcoming events for those fighters out there dealing with different forms of IBD, from Crohn’s to Ulcerative Colitis.

Today! Ostomy Awareness Day

The Crohn’s and Colitis Foundation is hosting a live chat via Facebook to discuss life with an ostomy and how other fighters are learning to thrive. Tune in to ask questions, or just have a listen to fellow ostomy-havers. Stephanie from The Stolen Colon will be there to host.

Online Support Group for Patients and Caregivers

The Crohn’s and Colitis Foundation of America is now offering online support groups for patients with various forms of IBD, and also with those who are caregivers. A four-week series of online chats, you can connect with other IBD-ers every Monday evening. While you’re on the site, look around at the Community Forum and the FAQ page, for topics on everything from diet and nutrition to exercise and travel.

Rock the Night to Cure Crohn’s and Colitis

Perhaps the fanciest of the upcoming events, this fundraiser is taking over the Big Apple in search of funds to move research further. Drinks, music, and a silent auction are just a few of the features this event will serve up. Items up for auction include suite tickets to Yankees games or the opera, yoga classes, jewelry, and even a guitar signed by Maroon 5.

Online Ostomy Poll

The Michigan Chapter of the Crohn’s and Colitis Foundation is looking for folks with Crohn’s Disease and Ulcerative Colitis to grow their network and help fighters get more and better resources. Take their one-question poll to start learning more.

More info:

“About 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn’s disease will eventually require surgery to treat their disease. There are many types of surgery that may be performed, including surgery to create an ostomy. If you are currently living with, or have lived with before, an ostomy, please participate in our poll!”

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Crohn’s fighters share their stories

One of our favorite things to share is the stories from folks struggling with Crohn’s, Ulcerative Colitis, ostomy bags, and other forms of IBD. The fight in them is such an inspiration to us that we feel compelled to share their strength to continue to spread awareness and hopefully to find a cure.

Image may contain: 1 person, smiling, standingJessica,  Clinical Psychology Ph.D. student

“I wish others knew that people with IBD (and really all patients with chronic illnesses) deal with so much more than the physical symptoms of their disease. Having a chronic illness can take a huge mental and emotional toll. This doesn’t mean that all patients with IBD have a mental illness, but some report anxiety, depression, insomnia, and difficulty coping with their illness. On a side note, I wish patients with IBD knew that it’s OK to feel this way and that seeking help from a mental health professional is not a weakness, it’s a sign of strength. You are not alone!”

 

Michelle Lynn Law

“My last link to show my fight and support”

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Terri B. Faulkner20431516_1527529490639895_2330440838295497182_n

“My daughter 2 weeks ago at her Remicade Treatment. She has diagnosed 2 years ago 13 but We just started Remicade a year ago. Had no flares almost a year but now she’s experiencing what seems like an allergic reaction 10 minutes into the treatment last times. Been glaring since April so we are back on Prednisone Euceris. Hoping this isn’t a sign of Remicade failing.”

 

 

Kalee, NCCL Co-Chair

Image may contain: 1 person, smiling, standing, flower, outdoor and nature“I remember everything about the phone call from my doctor- where I was standing, who I was with, and what words my doctor chose when telling me about my diagnosis. I remember hurrying inside to look up the prognosis, treatment, and what my life might look like. To be honest, I was terrified and had no idea how I’d manage my disease in college. My Crohn’s Disease has brought me to some of my lowest points both mentally and physically, but it has also given me some of my biggest triumphs.

Life throws challenges your way but the Foundation and NCCL taught me several extremely valuable lessons. The first lesson is that you are not alone. I was introduced to one of the strongest and most incredible community of supports. The second lesson is that you are bigger than your disease and that your IBD does not define you. When I found out I was selected to be a part of the National Council of College Leaders, I was over the moon and originally visualizing what I could contribute to the council but it was the council that gave me the greatest gift possible- more than I could ever repay. The Foundation and council gave me the tools and confidence to recognize sub-par aspects of patient care and access to care and to actually do something about it. I’ve spoken to legislators about healthcare reforms, worked with FDA representatives and physicians about redefining the use of medical foods, and helped create calls to action.

These steps in the right direction and the hope that future IBD patients don’t have to travel the path I did are what have gotten me through some of my toughest moments in college. Now that I’ve graduated and am transitioning out of my role as council co-chair, I am forever grateful for the opportunity to be given a voice in the IBD community, to have been a part of a council that’s helped me grow more than I ever thought possible, and to start my journey as a future healthcare provider given all that I’ve learned through the Foundation.”

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The latest in digestive health news

Image result for digestive health graphicSo much is happening in the world of digestive health. Clinical trials and research are revealing new trends and treatments all the time; fundraisers are happening across the country; more people are learning about the risks and working to prevent colon cancer.

Here are a few interesting things happening in the digestive health world this week.

Michigan Fundraiser – Golf Fore Guts Silent Auction

If golfing isn’t your thing, you can still support this Crohn’s & Colitis Foundation initiative through their silent auction. You’ll find all sorts of signed sports memorabilia and even an in-home wine tasting for 12 of your favorite people.

“The 5th Annual Golf Fore Guts silent auction is open! Bidding will close at 5pm on Sunday, August 13th. You do not have to be present to win. Click the link below to see the list of silent auction items like a Miguel Cabrera signed baseball and TaylorMade golf drivers. To register click the Sign In button on the website or text fore17 to 24700. Happy Bidding!”

Dating with Inflammatory Bowel Disease

Sahara Fleetwood-Beresford shares with The Mighty her and many others’ struggle to date with various forms of IBD – something that folks with healthy guts might not even think of. As if dating isn’t difficult enough, having the added pressure of numerous bathroom trips, frequent fatigue, or wearing an ostomy can create some obstacles that make dating seem unworthy.

“It is small things like this that could affect even the early on stages of dating that I like to get off my chest sooner rather than later. That way, it will soon become clear apparent whether there is any compatibility. These may be small things, but they occur regularly and could present a problem in terms of the outlook for the relationship.”

Read the rest of her heartfelt, honest, and eye-opening blog on The Mighty.

Colon Cancer Rates Rising in Younger White Folks

In the United States, the black population has faced historically higher rates of colon cancer than any other ethnic group. However, the recent rates of colon cancer have increased in the white population – especially in those under 50. This presents a problem since most doctors agree that screening for colon cancer and other digestive issues isn’t necessary until the age of 50 for most. Those with a family history of the disease are encouraged to get screened earlier, but if you’re not aware of your history, you’re at a higher risk.

” The number of whites being diagnosed with colorectal cancer and their mortality rates are rising, even as blacks are seeing a decline in both categories,” says Kaiser Health News. “Despite those declines, however, blacks still have higher rates of death from the disease.”

So while the community is rallying to make sure people are taking as many preventive measures as possible, it might be time to look at the age in which we’re doing so.

The best way to protect yourself is to learn your family history, get to the doctor, and to be open to as many preventive methods as possible.

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Can one diet change ease Crohn’s?

Image result for plant based good fatsCrohn’s is a disease that hundreds of thousands suffer from in silence. An autoimmune disorder, the symptoms are different from person to person and just as difficult to treat.

Food is another challenge to folks fighting Crohn’s, with flare ups stemming from all types of sources. But a new study is linking an uptick in consumption of plant-based fats with a decrease in bad bacteria and inflammation in the digestive tract of mice.

“The finding is remarkable because it means that a Crohn’s patient could also have a beneficial effect on their gut bacteria and inflammation by only switching the type of fat in their diet,” said Alexander Rodriguez-Palacios, DVM, DVSc, PhD to EurekAlert.

The research seems rather promising, given that patients with Crohn’s could begin to see the benefits simply by swapping coconut oil for butter or using cocoa butter as a substitute.

Another positive aspect is the insight this offers medical researchers into what makes good fats, well, good.

“Ongoing studies are now helping us to understand which component of the ‘good’ and ‘bad’ fats make the difference,” Rodriguez-Palacios said. “Ultimately, we aim to identify the ‘good’ fat-loving microbes for testing as probiotics.”

In other words, this cross-referencing of research could start to pinpoint the magic potion for sufferers of Crohn’s. Since each person and their lower tract is unique, however, it’s not likely there will be a one-size-fits-all solution that comes out of this line of study. But getting closer to understanding what makes these good fats reduce inflammation and symptoms in any way is a positive step for patients.

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Our HOT LIST of good foods for digestion

Image result for leafy greensEating right for your digestive health doesn’t have to be a crazy health-food-store-expensive-ingredient journey. You probably have a lot of the foods that can help digestion and are also good for folks struggling with different forms of IBD.

Here’s our HOT LIST of foods that are great for your gut and not super fussy.

Good Fats

Avocado

This creamy goodness comes equipped with soluble fiber, which is much easier on your digestive tract than the insoluble stuff. And, once they’re ripe, they’re easy to prepare. Simply cut in have, twist out the core, and scoop into your dish.

Add some salt, garlic powder and black pepper, then mash together for a quick guacamole spread for sandwiches. Or scoop it into your blender, and add some lemon juice or vinegar, your favorite seasonings and herbs, and some Greek yogurt for a creamy green goddess dressing.

Smooth Nut Butters

The crunchy stuff can irritate your bowels if you struggle with Crohn’s, diverticulitis or other similar issues. The smooth stuff offers just the same amount of good fats, protein and fiber, but allows your body to do less work.

Add almond butter to a smoothie with blueberries, spinach and almond milk. Or dip carrots into peanut butter for a crunchy afternoon snack. Cashew butter works as a butter substitute if you’re in the mood for some baked good.

Salmon

This healthy-fat fish is a fan favorite. The oils are great for everything from your lower tract to your skin. Add some salt, brown sugar and pineapple and roast in tinfoil for a sweet and salty dinner. If fish isn’t your forte, order the salmon next time you’re out to eat, and let someone else do the cookin’.

Soft Leafy Greens

Spinach

Popeye’s favorite green is such for a reason. It’s loaded with vitamins, and the leaves aren’t as tough on your gut as kale or the tougher greens are. Spinach is a great vehicle for flavor. Saute a bag in a bit of olive oil with salt and fresh garlic for a super simple side dish. Add it to your smoothie since the flavor and texture will blend right in. Or add a handful to your next salad.

Arugula

Arugula is a really flavorful green that’s got a peppery bite that’s a wonderful addition to most dishes. Throw a handful into a pita pocket with some tuna fish, onion and Greek yogurt for an easy lunch. Or stir this into some warm rice and add olives, diced bell peppers and crumbled feta.

Watercress 

This super food has been named the most nutritious of all the greens. It’s a delicate and soft leaf that won’t irritate your stomach, and mixes in with any salad recipe you can think of. Same goes for smoothies – add some watercress with strawberries, peanut butter and coconut milk for a yummy breakfast or afternoon snack. And watercress goes well with your favorite veggies, diced and dressed the way you like. Add some salmon for a well-balanced meal.

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Take Steps for Crohn’s, Colitis and IBD: This Saturday in Royal Oak

Around 1.6 million Americans suffer from some type of IBD, including Crohn’s and Ulcerative Colitis. The worst part about these numbers is that there is no cure, just treatment plans that aren’t guaranteed. And of all those plans, every person fighting a form of IBD reacts differently.

So what can we do?

First thing’s first: Take Steps! The Crohn’s & Colitis Foundation of America hosts walks all across the country to raise awareness and funds for all forms of IBD. This Saturday, June 10, 2017, you can participate in our very own walk in Royal Oak.

Join the Center for Digestive Health as we sponsor a Take Steps walk for the cure in Meininger Park. Along with the walk is a festival full of activities and sponsors with additional information. Check in and the festival begin at 9am, the walk itself starts at 10:30am. All age levels are welcome.

What will the walk support?

Groundbreaking research, empowered patients, and wise investments, all with the goal of furthering research and getting closer to a cure.

“Our research is unprecedented and has significant potential to directly transform IBD patients’ well-being. We are incredibly proud of the work our researchers do each and every day,” says the Crohn’s & Colitis Foundation. “Our national and local programs and services are designed to provide patients of all ages and their loved ones with helpful information to better manage their disease while providing a supportive forum to share experiences and concerns, and connect with others.”

The fundraising is as easy as it comes. Register for the walk, and convince a few close friends to give as little as $16 each. You can also organize a team for the event, to up the awareness and the cash flow to the organization. Bring your kids, friends and pets to enjoy the day’s festivities.

For more information, visit the CCFA’s FAQ page regarding the race, learn more about what Crohn’s and Colitis are, and have a look at specifically where the money goes, so you can rest assured that your efforts are in the right place.

We hope to see you there!

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