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MDF National Chairman’s report September 2006
First of all thank you to all our members for their hard work over the past year. Sometimes it’s only expected of someone to follow an instruction, but when he or she uses their own initiative, that brings major changes to our organization. These actions do not go by unnoticed and are highly appreciated.
Many things have happened this past year, and some changes have occurred.
We are thankful for all the tasks that were accomplished.
Awareness:
We did a lot of Awareness, bringing Muscular Dystrophy to the Public, Medical Practitioners and Specialists
- The Magazine: We want to thank Lee Leith for her dedication of the past
years in compiling, finalizing and distributing the Magazine and the phenomenal work she’s put into growing this from a newsletter into a magazine and kept it going. We also want to thank Sherry-Lynn who has taken over the editor’s position and to congratulate her on the New Look of the Magazine.
- Our TV adverts appeared across the DSTV channels.
- Wendy was on SABC’s Morning Live in September 2005.
- Tsidi was on SABC’s Morning Live in September 2006
- Our Radio Advert was heard on the Primedia channels.
- Articles were placed in local newspapers.
- Tsidi is holding a Big event in Soweto for awareness on the 16-09-06
- Our website was updated.
- For the first time Xhosa Fact sheet appeared on the website, and I want to
say thanks to Dr. Jeanine Heckmann.
- Thanks also to Marco for updating our research application forms on the
website.
Funding and Fundraising:
- We had various meetings with Downes Murray International. We are looking
forward working with them in the year 2006/7.
- Crossbow’s projects have brought in substantial amounts and grown
awareness of MD. They have 2 strategies planned for the future i.e. TV Advertising and Retail Call Centers. We wish them luck because as they grow stronger, we reap the benefits.
- Gauteng Branch compiled a plan of action on fundraising, short, medium and
long-term projects.
Research / Projects:
- We have only received one research application for the next funding cycle,
it is from Dr. K Donald on Duchenne. The application forms are on the website with the new deadlines.
- Funding was granted to upgrade our database project. All the branches
will benefit after completion of the exercise.
- We have funded three research projects to the value of R98.318.12:
Screening for RYR1 mutation in South African individuals and families with Malignant Hyperthermia (MH) susceptibility.
Molecular analysis of the DAF gene as a susceptibility factor to developing severe treatment-resistant ocular muscle involvement in Myasthenia Gravis Delineation of Muscular Dystrophy in the Western Cape; subgroups of Limb Girdle, connective tissue (rigid spine) and congenital forms.
Conferences – National and International
- Ilse and Maxine went to the International Disability 2005 Expo held at
Kyalami.
- Maxine went to the PPUSA 2005/ 2006
- Attie attended the FSHD Conference in Boston 2006
- Sherry-Lynn attended and Presented at the WANDA Conference in Turkey
General
- Ilse, one of our members and a dedicated committee member, passed-away in
the middle of this year. Her contributions were of great value to the MDF.
She will be dearly missed.
- John and Pat Collins have withdrawn from MD activities due to personal
circumstances.
- Win withdrew as the National Chairperson after a few months in the
position, Attie took over the position after a Eco vote.
- There were also some changes and movement in the branches.
- Our Lotto Application is ready to roll; and we are waiting for the date.
- The financials for 2005 is ready and audited. Next year, with the new
bookkeepers, the current books should be ready for our AGM.
Attie Greeff
MDF National Chairman
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