| On May 20th,2002 Gaby Wass and her Family prepare to walk in this years Queen's Birthday Parade at Queen's Park in Toronto, Ontario. |
| PRESIDENTS REPORT – Mary-Jane Bowyer -
I hope that everyone has had a safe and enjoyable summer. With the fall almost here we must concentrate on our fundraising for the upcoming year. I must say that I was very disappointed in the number of responses to our ‘Tea bag Fundraiser ‘. This is an excellent chance for us to get the word ‘Neurofibromatosis’ out there during May ( NF awareness month ). The concept was very good and it is my hope that we not be deterred this years poor response. Maybe it was just not explained fully to you. We only happened on it at the last minute and didn’t have time to embellish it. Each of us knows someone that would be pleased to support this worth while cause. If you have any suggestions, please feel free to contact us and discuss your thoughts. This Tea bag fundraiser is being practiced in other countries to promote May NF Awareness month. I hope it will be as successful here as well. Keep this in mind for next year. Also, our Annual draw tickets are included with this newsletter. It is our Annual campaign that provides us with funds necessary to update members, provide literature & fund research for the following year. Please extend past yourselves and try and sell as many tickets as possible. It is our wish to compile “ NF Information Packages “ for all the clinics and doctors in our province. This is a major undertaking for us and will be quite an endeavor. This is your last chance to bid on the stained glass Fruit Medley donated by Jules Beneteau. This is a very fine piece and would be a welcome addition to any window.
In our Member Profile, we will introduce you to Gaby Wass the newest member of our team of NF members who extend themselves to help make a difference in the NF world. Gaby has so many fresh ideas and is willing to do all she can to support our Society. A picture of her and her family taken before we walked in the Queen’s Birthday parade on Victoria Day is on the front page and then she talks of her son Dillon. I remember when I first joined the Society. I had many great ideas too, I needed her to motivate me into becoming more active. She sure keeps me on my toes. Also, Gaby’s involved with the Brantford Support Group with Rhonda Nasby and Marg Muise. Good luck ladies !
We need to compile an Email database listing doctors, clinics and specialists dealing with NF. If you have a name that we can add to our list, please feel free to send it onto us. There seems to be a demand for such and an urgent need. If you are called upon to aid us in this venue, please help us.
If any one of you have an expertise in computer’s, database information gathering or are willing to share your member profile with us please become involved. We need more volunteers. Those of us that are trying to do it all are becoming burned out. Which brings us to the next item of business. We currently have five executive directors, Sharon Kightley, Gladys Hamilton, Birgit Grimberger, Fay Drew and myself. We have members with great ideas but they have no say in how the Society is run. The motion was made at our last executive meeting to increase our executive from five to seven. This can only be accomplished by voting of the general membership to change our bylaws. We will do this at the Annual General Meeting in October. Please be prepared to vote on this item. To generate change and new ideas we need new blood; I don’t know why this did not occur to me in the past. In the words of Mark Twain “Even if you’re on the right track, you’ll get run over if you just sit there.” We are your Society if you want to see it move ahead with fresh ideas, please attend!
We have some very sick members in our Society; please remember them in your thoughts and prayers. |
| TREASURERS REPORT – Gladys Hamilton -
I would like to send a special thank you to all that have participated in our Tea Party Fundraiser so far. We have raised over $ 700.00. There are some trickling in as this goes to print, so remember if May is inconvenient for you to acknowledge your invitation; any month will do. It was so nice to see everyone at our Bi -Annual meeting and I’m looking forward to seeing you again at our Annual meeting on Sunday October 20th, 2002. We will have a raffle table again. I am always so amazed at the wide range of items displayed. If there is anything you would like to donate to it just bring it along. We appreciate all the help. If anyone has any penny jars they can bring them along. We should have some others available to take too.
A special Thank –You to Angie Hancock for her fundraising efforts and arranging
“ Hat Day “ at Elgin Mall.
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| MEMBERSHIP REPORT – Sharon Kightly -
Here we are ‘ enjoying the Dog Days of Summer.’ Had enough yet? It took lots of time getting to Northern Ontario, but it came without mercy! I remember that we might not get summer, as winter really wasn’t much. I’m anxiously awaiting fall – cooler, prettier, and quieter. Can’t wait! Just think 2002 is half gone already.
Our membership is still holding quite steady at 315 families. If you are mourning the loss of a loved one’s passing in this past few weeks or months, be assured that you are not alone, as others of us are also facing this very painful reality.
On a happier note, I’d like to wish my hyper-active mom a very happy 93rd birthday on Aug.16th.We seven children have no hope of ever filling her shoes. We all need glasses, two of us need walkers, two need hearing aids, none of which mom requires. What a blessing she has always been to me, her youngest daughter.
PLEASE, if you move send us your new address. We hate to lose track of anyone. Remember membership dues are due at our October meeting. See you Then. |
| ( BRANTFORD ) SUPPORT GROUP MEETING - Rhonda Nasby –
In April my mom, Marg Muise and I called our local newspaper and asked if they could do a feature article about Neurofibromatosis and to let our readers know that a support group was going to be formed.
On May 5th, 2002 we held our first meeting with 11 people in attendance. It was decided at this meeting that we would meet four times a year (January, April, July and October). The meetings will be a time for coming together to talk out our concerns and support one another. Any news or developments in research will also be shared. In the future we may have guest speakers attend to address any specific concerns. We will be planning to do some public awareness activities and some fundraising as well.
Our next meeting is July 28th, 2002 !!! We will be chatting about “ How to talk to your child about NF” and also the latest medical news. This is really a time and place for those attending to talk about anything they are concerned about in a relaxed setting with a flexible agenda.
I look forward to seeing everyone at the next meeting. God Bless. |
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