Cystic Fibrosis on the Trail
What is the Cystic Fibrosis Association of Missouri?
The Csytic Fibrosis Association of Missouri (CFAM) is a support group for those afflicted with cystic fibrosis, their families and friends and provides a living example fo the problem of cystic fibrosis at the grass roots level. The purpose of CFAM (as stated in the by-laws) is to provide infromation to the general public regarding the disease of cystic fibrosis and related diseases through the dissemination of pamphlets, and books at no cost to the recipients; to provide, at no cost, forums and support groups for persons afflicted with cystic fibrosis and related diseases, members of their families and other interested persons; and to raise funds to support research into the alleviation, cause and cure of cystic fibrosis and related diseases. Any person who supports the CFAM's purpose may become a member. There are no membership dues. Meetings are held 3 times a year, in March, in June and in October or November, at various locations around the state. Everyone is welcome to join us.
CF Awareness and Family Day!!!
November 3, 2001
Columbia Country Club
Come join us for the 2001 CF Awareness and Family day. There will be information; a chance to meet other CF families, while researchers, Docs, and nurses; memories photo displays; and food! We will be meeting at the Columbia Country Club, 2210 Country Club Drive (phone number: 573-449-4115).
9:30 am - continental breakfast
10:00 am - morning presentations
12:00 noon - lunch
1:00 pm - afternoon presentations
3:45 to 4:30 pm - networking
From I-70 take the Providence exit, go south on Providence to Broadway turn left on Broadway (east) to Old Hwy. 63, go left on Old Hwy. 63 to Country Club Drive (on the right hand side of the road) and follow Country Club Drive to the club house.
From Hwy. 63 take the Broadway exit, go west on Broadway to Old Hwy. 63 to Country Club Drive (on the right hand side of the road) and follow Country Club Drive to the club house.
Please notify Shawn by Friday, October 26th @ 573-882-6978, if you are planning to attend. If you need a hotel close by let us know and we'll be glad to make some suggestions.
Welcome to this special issue of the Cystic Fibrosis Association of Missouri newsletter "Cystic Fibrosis on the Trail". In this newsletter we share information on CF treatments, research, activities, and we share our own experiences. Cystic Fibrosis, simply put, is a genetic disease with two main problems: the disease involves the lungs with cough and breathing difficulty, and the intestinal tract with poor digestion. Some individuals with CF progress in the severity of their disease, while others remain physically well into adulthood. Much research in Missouri and worldwide is focused on understanding and treating this chronic, and often fatal, disease. You may be getting this newsletter for the first time; if so, welcome to our Mid-Missouri community who share the common thread of cystic fibrosis (CF) in our lives, in one way or another, and please let us know if you would like to be put on our regular mailing list.
"Don't Forget to Remember". As we celebrate the more than 15 years of thIs organization and just over 10 years of this publication's existence, we are taking time to remember and have included here a small sampling of our "Living Memories". This special issue is dedicated to our loved ones who have passed away, and to the celebration of the lives and labors of those currently living with CF, caring for those with CF, and supporting research and the search for ways to improve life with CF. We extend our grateful thanks to all the many individuals who share this journey with us.
The Editorial Staff: Peter Konig, Md, PhD, Gavin Graff, MD, Connie Fenton, RN, Deon Wessler-Starman, RN, Shawn Willingham, Senior Secretary Cystic Fibrosis Center, Deborah Chance, PhD, Thomas Mawhinney, PhD, and Diane Carney, CFAM Treasurer
A LETTER FROM OUR PRESIDENT
Hello Cystic Fibrosis Family and Friends,
At a time like this, it is hard to know what to say. First, I would like to send out my thoughts and prayers to everyone in our country as we have all been truly affected by the situation in our country. We must move forward and continue our work at hand. We have had a good year in the Missouri Cystic Fibrosis Association with fund raisers and meetings. Our music show in West Plains; Bass Tournament in Arkansas; the Hoff-A-Thon in Jefferson City; and numerous other fund raisers around the state. I have been in contact with some new families in my area that did not know about our Missouri Association and what we do. Just a reminder to all that we need to reach out to these new people in our areas by first visiting with them; get them on our newsletter mailing list; invite them to our meetings; and, maybe even offer to take them to a meeting or a fund raiser. Our meeting in June at the Douglas residence near Cole Camp was a very enjoyable time. We had a great outdoor lunch, meeting, and talks from Drs. Konig, Mawhinney, and Chance. It was a beautiful day. Our next meeting is Novermber 3, at Columbia for our Cystic Fibrosis Awareness Day. There is always new and important information. Please put it on your calenders. As a closing, let us all not only remember our Cystic Fibrosis Families but our country as well.
Ruth Elliston, CFAM President
RECENT AND UPCOMING CFAM EVENTS AND CFAM NEWS
The CFAM Meeting was held on June 30th at Debbie, Steve and Chris Douglas' home in Cole Camp, Missouri. A big thanks goes out to the Douglas' for hosting the meal and the meetin. The meeting was called to order and introductions were made. Old and new business was discussed and updates were given.
June CFAM Meeting at the Douglas'
Old Business: Rick and Lois Frazier reported that 312 boats entered the Bass Tournament at Lake Norfork, Henderson Arkansas. They also gave an update on the annual music show in West Plains. The 2002 music show is tentatively planned for Saturday, March 23; the musical guest is not yet known. A discussion was held about us wearing some identifying clothes at CF fund-raising events such as sweat shirts, t-shirts, or vests. Vests won the vote.
New Business: The Golf Tournament will be July 28th in Mountain View, MO. The Hoof-A-Thon will be the 2nd-3rd of September - everyone will be in Eugene, MO on Friday night. We mentioned the Scholarship program but have not yet had any applicants. We discussed several dates for the CF Awareness Day in Columbia and decided on November 3, 2001. Dr. Konig reported about staffing and new research studies in Child Health. The Cystic Fibrosis Foundation approved the submission of the grant for the Salmeterol study. Also, the Diabetes and Albuterol in Cystic Fibrosis study is to start soon. Dr. Mawhinney and Dr. Chance reprorted that there is a lot going on in their areas of research and edcuation this summer. The Experiment Station Chem Lab, that Dr. Mawhinney directs, is renovating lab space and purchasing new equipment that can be used in both the service work and in research. They have three undergraduate students this summer learning about research and cystic fibrosis.
Other News around the Med Center and beyond: The Medical School Dean approved a new Pulmonologist position for the Child Health Department. Recruiting has already begun. One candidate is Dr. Chris Oermann, MD. Some folks know him from his training days at MU. His wife is a pediatric oncologist. They also approved a 1/2 nurse position occupied by Ken Reed. The basic science doctors Tom Mawhinney and Deborah Chance enjoyed opportunities to continue their educations. They attended a Conference on Ethics in Breaking Edge Biomedical Research in May; and International Glyco (Carbohydrate) Conference in August; and will be attending the North American Cystic Fibrosis Conference (NACFC) in October. Dr. Chance was honored to be invited workshop speaker and will speak about MU research with what parts of bacteria's surfaces help them bind to mucins and to cells. Congratulations Deborah!
News Update since the meeting: Dr. Stark had planned on taking a position in New Mexico and leaving at the end of August. We are very happy to announce that Dr. Stark is NOT leaving. He has decided to stick around the University a little while longer. On behalf of everyone who is touched by cystic fibrosis in any way, I say thank you. Your dedication is wonderful and our gratitude is tremendous.
Sabrina Smart, CFAM Secretary
Charity Golf Tournament in Mountain View
The golf was great, the food superb and the generosity was unsurpassed at this year's Physical Therapy Specialists Clinic Charity Golf Tournament held at the Dayne Glass Golf Course in Mountain View, Missouri. One hundred and fifty six golfers braved the heat, humidity and high chanCe of thunderstorms on Saturday July 28th, to help raise money for college scholarships. A silent auction was held through out the day.
Dan Boever provided entertainment at noon with his one-of-a-kind long drive comedy show. At the end of the day all the golfers sat down at a barbecue dinner while the contest, prize and auctioin winners were announced. The dinner was prepared by Dwayne Hensley and the Cystic Fibrosis crew who donated their time and talent to feed the hungry crowd. In addition Lois and Rick Frazier donated their day and manned the Cystic Fibrosis hole collecting money for chances on a Big Bertha Steelhead Driver (donated by Deon and David Starman and friends).
If anyonE is interested in participating in next year's tournament please contact Deon @ 573-882-8953.
Deon Wessler-Starman, RN
18th Annual Hoof-A-Thon
The 18th Cystic Fibrosis Hoof-A-Thon was held on September 7 and 8, 2001. The trail ride is held every year, the Friday and Saturday after Labor Day. The riders started their ride at Westgate Lanes, Jefferson City Friday morning and rode to Eugene. When the riders come in off the road on Friday evening, we counted 182 horses and riders! On Friday night, we had a great party starting with a pig roast. Then several wonderful doctors and nurses from Columbia were introduced to the riders. There were many beautiful handmade items for the auction. Then we had a great time listening to the DJ and dancing. The ride finished up on Saturday, witht he riders going from Eugene to Eldon. Grant Toomey was named the top fund raiser of everybody. The ride was very safe with none of the riders getting hurt. Although a few did get bucked off their horses. The amazing thing was that the rain held off til after the most of the dance was over. Our little CF angels were certainly over us that day to help us have a safe and successful Hoof-A-Thon.
Come join us in Columbia for the 2001 CF Awareness and Family Day on Saturday November 3rd. There will be information; a chance to meet with other CF families, with researchers, Docs, and nurses; photo displays; and food! We will be meeting at the Columbia Country Club, 2210 Country Club Drive. For directions and more information, see the front inside cover of the newsletter.
Cystic Fibrosis Awareness and Family Day November 3rd
Please notify Shawn by Friday, October 26th @ 573-882-6978, if you are planning to attend. If you need a hotel close by let us know and we'll be glad to make some suggestions. Hope to see you there.
Upcoming Events in Spring 2002
The annual spring CFAM meeting will be in West Plains Missouri on March 23, 2002. The 14th Annual Music Show to Benefit Cystic Fibrosis will be in West Plains Missouri, on the night of March 23, 2002 (plan to come for the whole day and night of fun; dont forget the after-show party back at the motel for all those who stay in town to get together and share some laughs with those who work on the Music Show).
The 16th Annual West Plains Bass Fishermans Association Buddy Bass Tournament is tentatively scheduled for May 4, 2002.
If you would like to help with any of these activities, contract Rick or Lois Frazier, 417-256-5388. More detailed information and directions will be included in the Spring 2002 Cystic Fibrosis on the Trail.
If you would like to be included in the CFAM e-mail directory, please send a note to Diane Carney at firstname.lastname@example.org. This is a great way to keep in touch with others in our group!
CFAM E-mail Directory