2022 Summer Newsletter

August 15, 2022
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Register now to join us at Growing Hope on September 16th!

Join us on Friday, September 16th from 5:30pm-9:30pm for a delicious and relaxing evening at the Winery at Sovereign Estates overlooking Lake Waconia with live jazz featuring Craig T. Olson and the Meritage Trio. Visit https://GrowingHope.givesmart.com for additional details and registration.

Meet former Doctor turned Chef, Jo Seddon!

Jo has opened a new restaurant, Gia on the Lake, on the Sovereign Estate grounds and will be catering dinner at Growing Hope alongside delicious wine pairings directly from the Sovereign Estates Winery. Gia on the Lake has already received rave reviews from The MSP magazine and has planned an Italian inspired menu for the evening. Dinner will be gluten free, with vegetarian options upon request at registration. Watch the above clip to meet Jo and hear about the delicious menu she will be serving including:

  • Harvest salad with arugula, charred brussel sprouts, apple, walnuts & gorgonzola
  • Quinoa & basil pesto salad with roasted summer vegetables & herby chicken
  • Risotto with roasted butternut & sage
  • Italian sausages & braised white beans (Vegetarian option: Roasted red peppers)
  • Vanilla bean pannacotta with mixed berry compote

Featured Speakers

James Adams, Ph. D
Arizona State University

Dr. Adams leads the Autism/Asperger’s Research Group at Arizona State University and has conducted clinical trials targeting microbial restoration of patients with Autism. Initial studies found Autism symptoms reduced nearly 50% during the two-year monitoring period and gastrointestinal symptoms reduced by approximately 60%. Dr. Adams and his colleague, Dr. Rosa Krajmalnik-Brown have second phase trials underway for adult and pediatric patients.

Alexander Khoruts, M.D.
University of Minnesota

Dr. Khoruts is the Director of the Microbiota Therapeutics Program (MTP) at the University of Minnesota. The MTP program is the only academic microbiota therapeutics manufacturing facility and stool donor program in the world and produces encapsulated, highly screened, healthy gut microbes. These therapeutics are treating patients suffering from recurrent C. difficile infections with a 98% success rate and targeting a host of illnesses in clinical trials around the country.

Matt Steiner, Ulcerative Colitis Patient

Matt resides in California with his family. He was diagnosed with Ulcerative Colitis seven years ago and his health drastically declined due to the severity of his illness. Matt enrolled in the Ulcerative Colitis clinical trial at the University of Minnesota and has made remarkable recovery through Intestinal Microbiota Transplants.

Register for Growing Hope at https://GrowingHope.givesmart.com

Join us at Twin Cities Marathon weekend this fall!

ACT has openings on our marathon and 10-mile race teams and welcome all running levels! If you’ve been on the fence about running this fall, be sure to sign up before registration closes in early September. General 10-mile race registration is closed and so the remaining 10-mile slots on our charity team will go quickly! Register today at www.achievingcures.com/2022tcmarathon

What does life with Ulcerative Colitis look like?

Amanda Kabage, a researcher at the University of Minnesota, was recently diagnosed with Ulcerative Colitis. Hear Amanda’s experience with UC, personally and working with patients, and why she is running for ACT. Read more and sponsor Amanda at https://app.mobilecause.com/vf/2022TCM/AmandaKabage

  1. Medication for life to try to keep UC in remission for as long as possible. I am on one of the mildest medications for UC. Some are very potent. Some people have to be on immunosuppressive meds, which can make them vulnerable to infections.
  2. Regular lab testing to make sure your medications are not damaging other organs. My medication requires routine kidney tests.
  3. Many UC medications can make patients more sensitive to sunlight and sunburns, which increases skin cancer risk.
  4. Increased risk for colon cancer.
  5. Higher risk of other cancers like lymphoma and leukemia, based on long-term use of certain medications.
  6. Urgency to go to the bathroom. Sometimes I’m literally running to a bathroom. It often strikes with no warning.

7. Psychologically dealing with blood in your stool. This one has always been hard for me. Seeing the toilet filled with blood every time you go to the bathroom for weeks or months almost breaks me. For me, it’s a visual reminder of how sick I am. It often causes anemia for me, which makes me exhausted. Iron supplements help, but I get nauseated from them, so then I’m on anti-nausea medications too.

8. Pain. My pain occurs on my left side just under my rib cage, which is common for UC. There is little one can do to manage the pain. You aren’t supposed to take NSAIDs, which means no ibuprofen or aspirin. Tylenol only, and you can only take so much Tylenol because it can cause liver problems. So, you often just have to live with pain.

9. Needing to stick to specific diets, and totally different types of diets whether you’re in a flare or in remission. Certain foods can exacerbate all symptoms. For me, when foods are an issue, it causes pain.

10. Malabsorption issues. Depending on the symptoms of your flare, you may not always be breaking your food down properly and getting the nutrients you need. UC patients can become deficient in nutrients. Sometimes other organs make this worse, because your pancreas, kidneys, and liver may be affected by your disease.

11. Having people try to sympathize with your disease by telling you about a time when they had food poisoning or telling you about other acute GI ailments they have suffered. I equate this to someone telling a person with clinical depression, “I know what it’s like to be depressed because I’ve been sad before.” I know the intention is to show empathy, but to many people, it minimizes their disease.

12. Bailing on social plans last minute because your body is just not up to it. Thankfully I have wonderful friends who are understanding about this!

13. UC increases my migraine frequency when I’m in a flare. Migraines debilitate me. I have to be in a quiet, dark place with no smells and then wait for my migraine meds to kick in and knock me out for a few hours.

14. Frequent hospital visits.  My case is mild, but it is common for many patients to experience numerous emergency room visits and even long-term hospitalization.

15. Surgery.  Most resources estimate at least 20% of patients with UC eventually require surgery.

That’s a partial list of what it’s like to have UC, and this doesn’t just come from my own experience. I have worked with UC patients for over 8 years now. Many patients have far longer and more severe lists than I do. Despite all that I’ve been going through these past few months, I’m staying as positive as I can. I have the best GI team at the University of Minnesota at my disposal. I’m lucky to know so much about this disease and how to manage it. And I’ve decided I’m not going to let UC keep me from running the TC 10 mile this fall with my sister. I’m going to train, as long as my body lets me, and hope that in a few months I’ll be able to run the race. It’s also important for me to continue all the advocacy work I do regarding GI illnesses and microbiome research. I desperately want to remove the stigma and embarrassment of GI issues, so people don’t suffer alone or in silence. I know how lucky I am compared to many people with this disease. I have this guy in the photo next to me, Dr. Khoruts, my doctor and boss, who cares deeply for my health and well-being.


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