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Continued from Vol. 13, No.2

The first installment of this article appeared in the last Newsletter (Winter 1995-96). In that issue I gave a brief glimpse of our personal family history and our early contacts with other families. That article also reported on our first family/professional Symposium (conference) which was held in 1982 at our local parochial school with almost 100 attending. The Symposium came about because of our desire to learn more and to share with other families. The following continues the story of the development of our MSUD Family Support Group.

At our first symposium, we discussed the impracticability of continuing our circle letter which had served as a means of sharing until this time. It was taking too long to circle with the growing number of families scattered throughout the U.S. and Canada. We considered starting a newsletter and elected to have a symposium every other year.

The first MSUD Newsletter was published in February '83. I gathered information and sent it to Patty Swenson (mother of Sanse with MSUD) in Englewood, Colorado. She retyped all the information and articles, formatting them on legal sized paper, and then xeroxed them at her husband Larry's office. She also did some of the writing and mailed the newsletters. Larry and Patty did all this voluntarily, donating their time and materials.

That first Newsletter consisted of seven, well-filled, legal-sized pages plus a page listing 28 families with their addresses, number of children with MSUD (32) and their birth dates. It included a questionnaire to be filled out by all persons interested in receiving the Newsletter. Patty's history of their daughter, Sanse, in that issue was the first in our continuing series of family histories.

In our second Newsletter (Nov. '83), we reported some statistics from a survey by Virginia Schuett entitled "Treatment Programs for PKU and Selected Other Metabolic Diseases in the U.S.: A Survey." The survey reported that as of June 1982, there were 115 MSUD cases currently being followed in the U.S. Of these 73 were classical, 13 thiamine responsive, 23 other diagnosed forms and 6 for which a more specific diagnosis was unknown. By then we had contact with 35 families involving 49 children. Our goal was to give the remaining families the opportunity to contact us if they wished.

Peter Shaffer and his wife, Sharon, from Kentucky had spent considerable time and effort sending over 200 form letters to major medical centers in the U.S. and Canada in April '83. This notified them of our organization and encouraged medical professionals to give Peter's address and phone number to parents of children with MSUD. The mailing was made possible by the Genetic Testing, Counseling and Education Services Program at the University of Kentucky Medical Center which provided names, addresses, materials and photocopying services.

Peter had also consented to be our treasurer. In the second, Nov '83, issue of the Newsletter we asked for a donation of $5 to be sent to Peter with checks made out to Families with MSUD - our organizational name at that time.

In this same issue, Sue Ann Frederick from Wisconsin shared a paper she had written for one of her high school classes. It described MSUD and told of her own diagnosis and childhood experiences with the disease. One statement she made, "My body chemistry may not be able to handle all the changes of pregnancy, so I may not be able to have children," is of special interest considering the cover story later in Vol. 8, No.3 (Dec. '90). A picture of Sue Ann (Frederick) McKnight's baby accompanied an article Sue Ann wrote about her successful pregnancy experience and the birth of her perfectly normal little girl. She proved it possible, although it may not be safe for all women with MSUD to have children. The maternal concern had been covered earlier in the March '90 issue.

Patty and I managed only one Newsletter in '84 and one in '85. The '85 issue was 17 legal-sized pages with another questionnaire attached - probably our largest Newsletter. Patty and I were both very busy as I said in the next Newsletter - we squeezed Newsletters out through nooks and crannies of our very busy schedules. Patty and I also attended the "Genetics Support Groups: Volunteers and Professionals as Partners" conference in Washington, D.C. in the summer of '85. Patty reported on the meeting in the Feb. '86 issue.

One of the "extras" that interfered with publishing a 2nd issue in '85 was Shayla's accident. In July of that year, I had a doctor's appointment and told Shayla she could ride her bicycle down the road to her Aunt after she finished her work. She turned to cross the road suddenly because she forgot something. A car hit her in the passing lane. She was thrown onto the car windshield, shattering it, and then into the yard, narrowly missing a tree and mailbox. Her bike was demolished. In pain and bleeding badly from the head, she tried to get up and run to the house - it took a great deal to keep Shayla down in those days.

The paramedics expected serious head and neck injuries. I met her in the emergency room and knew she was fine because she was talking constantly - typically Shayla (Wayne says typically Mom, too). She was home again that night with a very sore body, some deep cuts and abrasions, and a broken collarbone. She healed rapidly and was doing some housework by the second week. However, she soon started having headaches which have plagued her since.

I wrote, "It is rather ironic that this accident brought many visitors, cards, gifts and expressions of concern, whereas a bad case of the flu is so much more critical. Therein lies the difference between the MSUD child and those without MSUD."

Personal accounts of the children like this account of Shayla's accident were frequent in the early Newsletters. There were reports of children having tonsils or teeth removed and their reactions. Peter and Sharon Shaffer's Jessica falling off a 10, foot wall holding her formula in a glass with a lid and not spilling a drop. Peter said, "In the kitchen it always goes all over." New births and deaths were reported with some details. Various accomplishments of the children were described and observations made such as - MSUD children have a keen sense of smell. They gag easily at bad smells including their own bathroom smells which can create embarrassing problems.

We had good reader participation in the early Newsletters. Our sections on "MSUD Family News," "Low Protein Recipes," "MSUD Featured Families" and "MSUD Parent Question and Answer Exchange" were well supplied. In the third issue, April '84, we printed the first professional article reviews. That issue included reviews of presentations given at the '83 conference of the Neuro-Metabolic Disorders held in Ann Arbor. These conferences are still a source of information for our Newsletters.

Patty typed the two '86 issues of the Newsletter, but had them printed in the letter-sized format we still use. Patty had an artist design our present logo for the February '86 issue. It first appeared on the masthead of the November issue. That Newsletter had a little over 18 pages, but the type was larger than our current print.

For the first '87 issue Patty sent the information to a printer. It was typed on their computer, but Patty mailed them. It was decided that I could do the same thing here. Patty had fulfilled a very important role in getting our Newsletter off to a good start. She and Larry did not spare of their time, money and facilities and deserve much credit for the early success of the organization.

I was thankful for a printing firm just two miles up the road from us. This firm was owned and operated by the Stanley Brubaker family (no relation). However, they were friends and went far beyond the call of duty helping with the Newsletters. My typewritten pages with corrections in the margins were taken in stride. They tolerated my last minute rush requests with calm reassurance. I am sure they could have sympathized with Patty.

In Dec. '87 we included pictures for the first time. Pictured were Elan Geffen from Virginia, Michael Toth from Ontario, Canada and Laura Henry from Great Britain. We had gone international.

I published only one 7 page Newsletter in '88. This is the year we designed and built our current house which involved a lot of my time. An 18 year old friend of Shayla's, who had helped me with the typing for the '87 issues, was killed in a tragic accident soon after the Dec. issue was sent out. Nineteen eighty-eight was an exhausting year.

I tried to make up for it by getting 3 issues out in both '89 and '90. Since then I have been back to publishing only 2 issues a year. Other changes made during these years included:
  • Family Contact Person, Bonnie Koons from Pennsylvania, and Professional Contact Person, Alice Mazur, R.N., P.N.P. from CHOP in Philadelphia were added to the masthead in June '89. The format changed again in May '93 with the addition of Mary Kathryn Martin as Food News Editor and Kelly Green, R.D. as Recipe Editor.
  • We added a Kid's Klub children's section as an insert beginning with the Nov. '89 issue. Bonnie Koons did a great job on this section, but unfortunately after several issues, it was discontinued for lack of response. Lack of input caused the demise of other Newsletter sections over the years.
  • I used a friend's computer to type the '91 issues while she did the final formatting for me. In '92 we bought our own computer thus opening up the whole new world of formatting for me.

Other organizational changes, improvements(?) and accomplishments during these first 13 years:
  • At the second Symposium we discussed printing a Free Protein Food List. I compiled a list of "free" foods using Virginia Schuett's Low Protein Food List and the Lo-Pro Guide from the Metabolism Clinic, Riley Hospital, Indianapolis, IN. Later the list was printed on a card to be handed to persons involved with the care of a child with MSUD. It fell by the wayside for lack of interest.
  • Information packets were proposed in the April '87 issue of the Newsletter. Bonnie Koons helped gather the materials and began making them available to new families in '89. She continued until she handed over the reins of contact person to Dawn Hahn in '93. The packets are being upgraded at this time. Dawn is in charge of distributing them.
  • After several years of trying to find a professional who would write a brochure describing MSUD, several families gathered to brainstorm. With this help I wrote an information sheet. Later we were able to finance a brochure which was recently updated.
  • In Dec. '90 the subscription rate increased to $10.00 and a prayer hot line was started for those who wished to be involved.
  • At a business meeting in April '89, we discussed becoming a nonprofit organization. We were small enough that it was not essential, but we were growing. Irv Geffen, who lived in Virginia at that time, assumed the responsibility to tackle the job. We were legally incorporated in Virginia in 1990. Irv graciously paid the yearly legal fees for the next couple of years. It wasn't until '93 that all the red tape was unwound and we had our nonprofit status. We have always operated on a nonprofit basis using volunteers.
  • Board members were elected at the Symposium in Montreal in June '90. Even though being so scattered creates a problem for face-to-face board meetings, they all have served faithfully:
    • President- Wayne Brubacher, Goshen, IN
    • Vice President- Sharon Shaffer, Flemingsburg, KY
    • Bonnie Lou Koons- Secretary, Harrisburg, PA
    • Peter Shaffer- Treasurer, Flemingsburg, KY
    • Irving Geffen- Cherry Hill, NJ
    • Joseph Balinsky- Hampstead, Quebec
    • Barbara Rudd- North Adams, MA

Many persons have been involved in keeping the MSUD Family Support Group a growing and evolving organization. One very hard working group I haven't mentioned yet - those who organized and sponsored the Symposiums. Here is a list of the Symposiums to date.

DATE PLACE FAMILY SPONSOR
5/82 Goshen, IN Wayne Brubachers
6/84 Flemingsburg, KY Peter Shaffers
6/86 Denver, CO Larry Swensons
6/88 Hinkletown, PA Pennsylvania Families
6/90 Montreal, Quebec Joseph Balinskys
6/92 Toronto, Ontario Toths & Sullivans
6/94 Columbia, MO Missouri Families

Medical centers in each of theses areas were very helpful and supportive and sometimes did a major part of the planning. Professionals and families working together can accomplish so much. Sandy and Dave Bulcher in conjunction with the University Hospital in Ann Arbor, MI are working hard on the next Symposium in Columbus, Ohio.

Two other persons I want to acknowledge are our daughter, Shayla, and my "teacher" and indispensable helper, Martha Stern. Without Shayla to carry on the housework when Mom is glued to the computer, I could not spend the time necessary to do the Newsletter and the many other necessary tasks.

Martha came into my life soon after I started working on a computer. She is a very keen editor and great teacher. She has the eye of an artist and the patience of Job. She is a behind-the-scenes major asset to the organization and lives less than 10 miles from me. The rest of you seem so far away.

Tish Fuller faithfully puts all the information I send her on disk. This is a great benefit and I truly appreciate it. And last but not least is my long-suffering husband who puts up with a tense bundle of nerves at least twice a year.

Above all the Lord has blessed this organization and without His blessing we would fail. Thanks be to our gracious loving Heavenly Father in whom I trust.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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