ACT Newsletter

May 7, 2022
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Save the Date for Growing Hope!

Mark your calendars for our annual fall fundraiser, Growing Hope on Friday, September 16th at 5:30pm. We are returning to the beautiful Winery at Sovereign Estates on Lake Waconia for a relaxing evening including delicious food and wine pairings, live music, and updates from leading researchers on advancements being made through microbial therapeutics. More details and registration information will be coming soon. In the meantime, you can check out highlights from last year’s event at: www.achievingcures.com/2022growinghope.

Run for Nana in Denver, Colorado

ACT is thrilled to join our Run for Nana team again in Colorado this spring for Colfax Marathon weekend on May 14th and 15th! Lead by Emily Haller, our race team will be participating in the half marathon, 10-mile and 5k races! Our Colfax team has been running to support microbial research and treatment since 2016 after Emily Haller’s Nana lost her battle to C. difficile. Through their dedication, they have raised over$100,000 advancing cures and research for C. difficile and other health maladies. This year, we have the incredible privilege of having Dr. Alexander Khoruts join us for race weekend, including a special gathering on Saturday, May 14at 11:00am at the Blue Moon Brewery after the 5K race. If you’re in the Denver area, join us in cheering on our incredible team of runners and at our post-race event! You can learn more and sponsor our Run for Nana team at: www.achievingcures.com/colfaxmarathon.

Twin Cities Marathon

Our Twin Cities Marathon and 10-Mile teams are hitting the trails this spring and summer to prepare for race day on October .Our TCM race team has made a lasting impact on microbial research and treatment and have fundraised over $275,000 since 2016. We still have openings on both our marathon and 10-mile team if you or a loved one is interested in joining us Both races sold out quickly last year, so reserve your spot today at www.achievingcures.com/2022tcmarathon. Meet and sponsor or current race team members at https://app.mobilecause.com/vf/2022TCM.

Patient & Provider Spotlight: Emma Turnquist

My name is Emma Turnquist, and I am a practicing physician assistant within the Division of Gastroenterology at the University of Minnesota and support patients suffering from recurrent C difficile infections. I’m sharing my own experience with recurrent C. difficile infections in effort to offer hope to others going through similar experiences, but also to help raise awareness in the both the public and medical communities on the management of C. difficile.

When my daughter was born the Spring of 2019, I was basking in some of the best days of my life, enjoying the advent of warmer weather as a newly minted family of four. I was healthy, happy, and enjoying my time a way from the busy oncology practice that I had been working at. This all came to a quick halt after a stubborn case of mastitis and multiple antibiotics. I was diagnosed with C. difficile after an abrupt onset of fevers, chills, abdominal discomfort, and relentless diarrhea. I was given a course of antibiotics, and my symptoms entirely resolved. Like clockwork, one week later, it was back. And it kept coming back, and each time, it was worse. The idyllic postpartum leave that I had envisioned faded away, exchanged for a nightmarish roller coaster of recurrent C. difficile infections.

By the time that I was eligible for an IMT, I had been dealing with these recurrent C. difficile episodes for months. Though the physical toll that it had on me was undeniable, even worse was the mental impact. There were many days where my daughter, still an infant, spent more time in her bouncer in the bathroom than she did in my arms. I lost faith in my body and health. For the first time in my life, I knew what it felt like to be truly depressed. I vividly remember the day that I received the IMT; any hope that I had was blanketed by pessimism after having had so many recurrences. In the days that followed, I waited for the C. difficile to come back, but for the first time, it never did. In a matter of days, my life was given back to me. I was able to be an active parent in my children’s lives for the first time in many months. I could feel my body, and mind, healing. I am forever grateful to the University of Minnesota and Achieving Cures Together in making this lifesaving treatment available to me.

While I hope that my story offers a glimmer of hope to those who may be stuck in that recurrent cycle that I know all too well, one of my own goals as a provider is to make sure that patients don’t have to share any of the frustrations that I had in the management of the infection itself. Even as a medical provider, one of the most frustrating facets of my own experience with C. difficile was the obstacles I faced in navigating the treatment. Had I not had such an intimate knowledge and access to the medical system, I am certain my course would have looked very different, and sadly, it often does for our patients. I always joke that, through all of it, there was a silver lining to having C diff, which was leading me to my current position within our Gastroenterology division. I feel incredibly fortunate to be able to help care for patients affected by recurrent infections and guide them through their IMT process. As I grow into this role, I am hopeful to continue to work with Achieving Cures Together to raise awareness for antibiotic stewardship, education on the management on C. difficile, and access to IMT for those who are eligible.

The Doctor’s Corner:

The COVID pandemic disrupted access to curative microbiota transplants across the United States for patients with recurrent C. difficile infections who failed all other available therapies. However, with the critical help from Achieving Cures Together, the University of Minnesota Microbiota Therapeutics Program has remained active and provided curative treatments in Minnesota, Indiana, Rhode Island, and Massachusetts, free of charge, to more than 400 patients through this time period. All treatment outcomes were captured in a prospective registry. The analysis of registry data showed that a single microbiota transplant treatment was 85%effective in achieving a cure, and the vast majority of clinical failures were rescued with one or two additional transplant treatments.

In January of 2022 we formed a partnership with OpenBiome, a non-profit based in Boston to provide microbiota transplant material to patients with C. difficile infections across the United States. All manufacturing will continue at the University of Minnesota using FDA-approved protocols and our goal is to serve even more patients.

In addition, the University of Minnesota Microbiota Therapeutics Program continues to focus on supporting early phase academic clinical trials with transplant material and targeting:

  • Adults and children with Autism (Arizona State University). Previous open label study suggested significant benefit in gastrointestinal symptoms and behavioral scores in this patient population. We anticipate early results of one of the placebo-controlled trials late 2022.
  • Pitt-Hopkins Disease (Arizona State University). This is a genetic disease that is also associated with a severe form of autism. We completed a small placebo-controlled trial which suggested significant benefit. We are now developing another trial with a next-generation transplant product.
  • Complications of Bone Marrow Transplantation(University of Minnesota). This placebo-controlled trial has reached its recruitment goal, and results should become available in late 2022.
  • Complications of Intensive Chemotherapy for Acute Leukemia (University of Minnesota). This placebo-controlled trial has stopped enrollment at about 35% recruitment target after running out of funds.
  • Advanced Liver Disease (Richmond VA &Virginia Commonwealth University). Placebo-controlled trials are halfway into their recruitment.
  •  Pulmonary Arterial Hypertension(University of Minnesota). This pilot open-label study has started recruitment.
  • Ulcerative Colitis (University of Minnesota). This placebo-controlled trial is nearing completion of the recruitment goal.
  • Post-operative Crohn’s disease(University of Minnesota). This trial just opened.
  • Recurrent C. difficile Infections, Multi-Center VA Trial This placebo-controlled trial is about halfway towards its recruitment goal.
  • Recurrent C. difficile Infections in Renal Transplant Patients. The University of Wisconsin is coordinating this placebo-controlled trial across five medical centers across the US.

 

Additional trials are moving through the regulatory checkpoints and fund-raising for new indications, including

  • Optimization of checkpoint immunotherapy against lung cancer (University of Minnesota)
  • Treatment of checkpoint inhibitor colitis(University of Minnesota)
  • Alopecia are at a (Columbia University, NY)
  • Food allergies (Harvard University, MA)
  • Heart failure (Columbia University, NY)
  • Parkinson’s disease (Baltimore, MD)

Dr. Alexander Khoruts, Director of the University of Minnesota Microbiota Therapeutics Program

 

Help us Spread the Word!

ACT is committed to creating awareness within the medical community about the healing properties of Intestinal Microbiota Transplants and creating partnerships with community groups invested in cures. To accomplish that, we are launching a new program, ACT Ambassadors! If you’re interested in connecting with community groups invested in Autism, Ulcerative Colitis, Crohn’s Disease, or another condition impacted by microbial diversity, please reach out to us atinfo@achievingcures.com! We’re creating condition specific teams and will provide materials, support, and guidance to assist you!

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