Cystic Fibrosis Association of North DakotaNOT AFFILIATED WITH CYSTIC FIBROSIS FOUNDATION OR THEIR NORTH DAKOTA CHAPTER

VOL. 35 Sept/Oct 2018 NO. 2

The Holiday Homes of Hope tour began in 2010 with a few caring friends in a Fargo, ND neighborhood. They had a shared love for holiday decor, and a heartfelt love for a friend’s child living with Cystic Fibrosis. They opened their own homes and their hearts for this very first tour.

Since then, the Holiday Homes of Hope tour has grown exponentially and features a different area neighborhood and expert designers each year.

The 2018 tour, held on November 10 and 11, our 9th year, features the stunning Bluestem neighborhoods of Moorhead, MN and will feature the Holiday Hope Boutique & Vendor Show, located at the Bluestem Event Center.

Families living with a child diagnosed with CF face many uncertainties, and yet, they also experience great hope and joy. These young people truly become our heroes!

This event embodies that hopeful spirit and supports the good work of the Cystic Fibrosis Association of North Dakota. All of the money raised at this event goes to directly help local young people living with this relentless disease.

Tickets are on sale now at all Fargo area Hornbacher’s stores or are available at the event.

For more information, visit HolidayHomesofHope.com

Tour the Moorhead Bluestem/Tessa Terrace Neighborhoods featuring these 2018 interior designers:

� Burlap Rustic Chic Boutique � Designingwomen2 � Eco Chic � Grace 1972 Design, featuring

Gathered Rentals and Floret + Foliage � Couture Line of Design � Holland’s � McNeal & Friends � Monica Hart Interior Design � Infinity Designs

Boutique & Vendor Show – Free & Open to the Public

Bluestem Event Center for the Arts Building 801 50th Avenue South

Make a day of it! Enjoy lunch provided by Cracked Pepper or take a coffee break between home tours. Shop boutique and vendors. Bid on silent auction items.

2018 Tour, Boutique & Vendor ShowSaturday, November 10 10:00 am to 5:00 pmSunday, November 11 Noon to 5:00 pm

$25 Tickets at FM Hornbachers

These short synopses of stories that have appeared in recent months regarding cystic fibrosis and research that is being done in many varying areas, also appear on CFA’s web page cfanorthdakota.com. To read the full stories you can simply go to CFA’s web page, find the newsletter link and go to this month’s newsletter. The stories with appropriate links will be there and all you have to do is “click.”

I’m Drowning – by Ella Balasa – October 11, 2018 – The epicenter of new CF research is the development of medications that will slow, stop, and hopefully even reverse the effects and damage that CF inflicts on the body...Unfortunately, I am still drowning. My FEV1 is 25%, so I am excluded from these trials.

Bicarbonate Eyed as Weapon to Combat 2 Most Prevalent Bacteria in CF – by Patricia Inacio, PhD – October 10, 2018 – Adding bicarbonate, a salt, to the culture medium of Pseudomonas aeruginosa and Staphylococcus aureus, two of the most common bacteria underlying lung infections in people with cystic fibrosis (CF), impairs the bacteria’s growth, a study shows.

Antibiotics Make Bacteria More Resistant by Lowering Microbial Diversity in Lungs, Study Suggests – by Vijaya Iyer – October 4, 2018 – Antibiotics lessen the diversity of microbes in the lungs of cystic fibrosis patients, and make these people more susceptible to infections with bacteria that are highly resistant to antibiotics, researchers reported.

MS1819-SD Shows Positive Results for Exocrine Pancreatic Insufficiency in Phase 2a Trial – by Ingra Mumal – October 1, 2018 – AzurRx BioPharma, in partnership with Mayoly Spindler, announced that a recent Phase 2a clinical trial testing MS1819-SD as a potential treatment for exocrine pancreatic insufficiency (EPI) achieved its goals, namely a statistically significant improvement in fat absorption. EPI often caused by cystic fibrosis.

Hit ‘em Where They Eat – Stealth Drug Fights Resistant Bacteria – by University of Washington – September 28, 2018 – Researchers have been on the hunt for new drugs to combat “superbugs” that cannot be penetrated by current antibiotics. Rather than looking for drugs that forcibly penetrate bacteria, researchers tried a new approach: tricking bacteria into taking up a molecule that looks like food, but wreaks havoc once inside. A study of this approach shows initial success in mice and humans.

Data Promising on Nitric Oxide as Treatment Against Mycobacterium abscessus, AIT Reports – by Igra Mumal – September 26, 2018 – Inhaled nitric oxide, AIT Therapeutics’ therapy candidate, was shown to have significant antibacterial activity against the bacterium Mycobacterium abscessus, which often infects the airways of patients with cystic fibrosis.

Researchers Find Way to Improve Antibiotics’ Efficacy Against Pseudomonas aeruginosa – by Vijaya Iyer – September 18, 2018 – Blocking superoxide dismutase, the enzyme that responds to stress, in Pseudomonas aeruginosa bacteria improves antibiotics’ efficacy, a Canadian study reported.

Genentech Antibiotic Shows Broad Activity Against Multidrug-resistant Bugs in Mice – by Arlene Weintraub – September 17, 2018 – When it comes to antibiotic-resistant bacteria, so-called Gram-negative bugs are the most worrisome to scientists and drug developers. That’s because these bacteria have not one but two membranes that shield them against antibiotic attacks. Scientists at Genentech have found a way to penetrate Gram-negative bacteria that they hope will lead to a whole new class of antibiotics.

Vertex and Treating CF: High Hopes for Triple Combinations and Gene Therapy Possibilities – by Emma Yasinski – September 17, 2018 – Now focus is on younger patients and a “new generation” of potential therapies. It’s part of Vertex’s trhee-part approach to treating all with CF by: running pediatric studies aiming to bring Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor, ivacaftor) to younger patients, knowing CF damage begins at birth; developing “triple combinations” for those 40% of patients whose underlying mutations don’t respond to its existing treatments; exploring gene-editing techniques that might aid the remaining 10% of patients whose mutations prevent them from making a CFTR protein at all.

29th Annual? Much has happened since that first Turkey Trot happened in 1989. Much has changed. The route. The headquarters location. The manner of keeping time. Certainly, the number of participants. The numbers of businesses and individuals that have helped to sponsor the event. The amount raised to fight cystic fibrosis.

With each year, we have learned more, and in learning, we’ve tried to hang onto those changes that made the race better. The first year, we started with fewer than 100 participants. We have reached 2,000 now and are hoping that number increases each year.

The idea always was to have the Turkey Trot be a family affair; and hopefully become a Thanksgiving family tradition. We think it has become that for many. We hope those of you who have been attending each year will continue to do so. We hope that if you

haven’t had a chance to join us yet, you will come and spend an hour with us this coming Thanksgiving Day, November 22nd.

Join us in the 5K or 10K run, or the 5K race-walk. All three are computer-timed. If you aren’t into competition on Thanksgiving morning, join us for the family fun walk. Come out and enjoy the fresh air and beauty of Bismarck’s Sertoma Park along the rambling Missouri River while helping some in your community who have to work for each breath of that fresh air because of cystic fibrosis.

We have included a Registration form in the newsletter, so it’s as easy as it can be.

You can also register online at CFATurkeyTrot.com.

Come join us. We’d love to see you!

29th Annual Turkey Trot

Cystic Fibrosis Research News

Photo credit Tom Stromme

The 9th Annual Walk/Run in memory of Sonia Balliet-Heidenreich was held on September 15 at Oak Grove Park in Fargo.

Generous friends and family raised over $10,000 to help our friends with CF to breathe easier. What a loving testimony to a beloved young lady whose life was cut short by CF. Watch for details for next year’s walk–registration usually opens up by mid-summer.

Sonia Balliet-Heidenreich

Our thanks are again extended to area friends for the ongoing giving taking place that help us to provide the programs serving our young members with cystic fibrosis. In each occasion for giving, it all helps us to continue the programs that serve our members with cystic fibrosis throughout the entire year.

We receive thanks from members for these programs, and it is our turn to pass along that appreciation. Donations to CFA through a variety of means help us to provide this service to our members.

Mid Dakota Medical Building Partnership donated $1,000 to help local families fighting cystic fibrosis. A $1,250 recurring donation was received from the Duska LaCount Charitable Trust. Sharon Hepner donated $200 to CFA.

Please #StartWithaSmile. When you shop at Amazon, consider starting at smile.amazon.com/ch/45-0355886 and a portion of your purchase will be donated to CFA. It does not cost you any additional money and it helps our friends with CF to #BreatheEasier. Thank you!

We appreciate all of you for each and every gift. You are supporting the programs that help CFA help our neighbors with cystic fibrosis.

• • •Foundations, service clubs, corporations, cooperatives, local businesses, public employees, schools, families and individuals recognize the importance of helping young people with cystic fibrosis. Your creative methods of remembering young people with cystic fibrosis are much appreciated. We will continue to help them – with your assistance. Thank you to all!

Don’t forget that donations may also be made at www.cfanorthdakota.com

Donations Directed Toward Ongoing Need

TO ENTER: Fill out the entry form and attach a check payable to Cystic Fibrosis Association.MAIL TO: Cystic Fibrosis Assoc., 921 S. 9th St., Suite 115, Bismarck, ND 58504

Number ________________ Office use only

NAME

Signature Parent signature if under 18 years of age

AGE ON RACE DAY

PHONE

ADDRESS CITY STATE ZIP

Turkey Trot Registration Form

EMAIL

IN CONSIDERATION OF YOUR ACCEPTING THIS ENTRY, I HEREBY WAIVE AND RELEASE ANY AND ALL RIGHTS AND CLAIMS FOR MYSELF, MY HEIRS, EXECUTORS AND ADMINISTRATORS, FOR DAMAGES I MAY HAVE AGAINST THE SPONSORS OF THIS RACE, THE CYSTIC FIBROSIS ASSOCIATION OF NORTH DAKOTA AND CO-SPONSORS, THEIR AGENTS, REPRESENTATIVES, SUCCESSORS, AND ASSIGNORS FOR ANY AND ALL INJURIES TO ME AT THE EVENT. I ALSO GRANT PERMISSION FOR THE FREE USE OF MY NAME, PICTURES AND/OR LIKENESS IN REPORTING OR PROMOTION OF THE EVENT.

10K Run5K Run

5K WalkFun Walk

T-Shirt SizeS M L XL XXL

The most fun 5K/10K in Bismarck/Mandan! Join us Thanksgiving morning for a brisk run along the mighty Missouri River! This is our 29th year and there is always something new.

921 South 9th Street, Suite 115Bismarck, ND 58504

ADDRESS SERVICE REQUESTED

Jeffrey L. GrossPresident

Kenneth KarlsExecutive Director and

Newsletter Editor

Non-Profit Org. U.S. Postage

PAIDPermit No. 419Bismarck, ND

58501

OctoberLogan Hahn 10/4Angela Schmidt 10/12Monte Deis 10/14Weston Bohner 10/15Tom Mattern 10/18Ashlee Rudolf 10/19

Dedicated to CFA’s

Volunteer Board of Directors

BirthdaysGiving memorials and honorariums are special ways of remembering and honoring someone who has made a difference in your life. The idea of helping someone else by honoring these individuals extends the positive impact of their lives in our world. Our thanks to those who remember…and to those they remembered. Thank you to all who donated!

Memorials

In MemoryDean Fatland

in memory of his wife and daughter

In HonorPat Julson

in honor of Marci Julson

Remembering Our Loved Ones

Included are those members who have passed, in keeping with the reality that though they are not here with us now, they are never forgotten.

When someone you love becomes a memory, the memory becomes a treasure.

NovemberRebecca Dahl 11/1Kevin Thom 11/3Ellen Thomsen-Voegeli 11/7Morgan Johnson 11/9Hannah Kramer 11/11Thalia Lanz 11/26Robert Schank 11/27Rita Rott 11/29