MDFSA Newsletter Issue 1 of 2024

MDFSA
NEWSLETTER
Issue 1: June 2024
The Muscular Dystrophy Foundation of
South Africa is a non-profit organization
that supports people affected with
muscular dystrophy and neuromuscular
disorders and endeavours to
improve the quality of life of its members.
THE ROLE OF THE MDF
We assist affected persons and their
families by providing information, support,
referrals to genetic counseling,
health facilities and providing assistive
devices such as motorized wheelchairs.
Creating public awareness is an important
aspect of the Foundation’s
work. We also strive to keep our members
updated via the MDF website and
MDF magazine.
WHAT IS MUSCULAR DYSTROPHY?
The term muscular dystrophy (MD)
describes a disorder that affects the
muscles, resulting in progressive
wasting and weakness of the muscle.
HOW YOU CAN HELP
Your support means hope if you ….
become a member
become a corporate member
make a financial donation
make a bequest
volunteer your time at your local
branch
and your help will enable us to provide
continued support to our members
MDFSA Embraces Change:
Introducing Our New Quarterly
Newsletter
In the ever-evolving landscape of information dissemination, the Muscular Dystrophy
Foundation of South Africa (MDFSA) is embracing change. Responding to
the dynamic needs of its readership, the decision has been made to transform
the traditional magazine into a more interactive and accessible format—a quarterly
newsletter in PDF format.
The quarterly newsletter aims to compile a comprehensive overview of all news
related to the Foundation. By collating this information into a succinct PDF format,
the newsletter ensures easy distribution and accessibility for all readers.
This shift to a more condensed format allows for a more streamlined reading
experience. Readers can download the newsletter directly, making it available
for offline reading, printing, and easy sharing within the muscular dystrophy
community. The focus is on delivering impactful and relevant information directly
to the readers' fingertips.
Simultaneously, the MDFSA is introducing a blog to bring about a new level of
engagement. The blog will be the go-to platform for real-time updates on research,
breakthroughs, and advancements in the field of muscular dystrophy.
Readers can engage with these updates, sharing their thoughts, opinions, and
personal experiences. This interactive space aims to create a sense of community
among those affected by muscular dystrophy and their supporters. Wellloved
sections from the traditional magazine, including "The View from Down
Here," "Sandra’s Thoughts," "Doctor’s Column," and "Random Gravity Check,"
will now find a new home on the blog. These features will continue to offer insightful
perspectives, personal stories, and expert advice, fostering a sense of
connection within the community.
This transformation marks a new chapter in MDFSA's commitment to providing
valuable, accessible, and engaging content. Join us in this exciting new phase!
Together, we can continue to inform, support, and inspire the muscular
dystrophy community.
For more information or to subscribe to our newsletter, please contact us at
gmnational@mdsa.org.za or call us on 011 472 9703.
By Gerda Brown

Partnering with Vega Design School
In January 2024, the Muscular Dystrophy Foundation of
South Africa (MDFSA) approached Vega Design School to
collaborate on an animated video featuring our mascot,
Abiri. This initiative aims to raise awareness about muscular
dystrophy.
Kindly, Lizette Carstens—Deputy Dean of Design—
partnered with MDFSA, involving students across Vega's
four campuses in Cape Town, Durban, Pretoria, and Johannesburg
to create this impactful animation.
On 13 and 14 May 2024, we conducted briefing sessions
and awareness workshops at all four campuses to educate
the students about muscular dystrophy and its profound
effects on individuals and their loved ones. These
sessions were led by our dedicated team, Samantha
Muller, Sarie Truter, Robert Scott and Dr. Pam Rapiti.
The sessions were warmly received by both lecturers
and students, who showed meaningful compassion and
eagerness to learn. We were inspired by the enthusiasm
and creativity demonstrated by everyone involved.
Special thanks to the following lecturers for their support
and hospitality:
By Sarie Truter
Cape Town Campus: Daghlaan Davids
Johannesburg and Pretoria Campuses: Mathew Mjindi
Durban Campus: Kuleza Phiri
We extend our heartfelt gratitude to Lizette Carstens,
the lecturers, and the students for their warm reception
and engaging discussions. Your passion and creativity
are truly inspiring, and we look forward to seeing the
final animated video that will help raise awareness
about muscular dystrophy.

The vision is an inclusive future, where every educational
space in South Africa, starting with Hermannsburg
School, is a model of accessibility. We strive to create
environments where individuals with muscular dystrophy
and all forms of mobility impairments can thrive
academically and socially, unhindered by physical barriers.
Our commitment is to construct ramps and paths
and weave accessibility into the heart of our community,
ensuring that every person, regardless of their mobility,
has the opportunity to pursue excellence in education
and contribute to the rich tapestry of our nation.
Our mission is to pilot Hermannsburg School, KwaZulu-
Natal, into a model of inclusivity, setting the standard
for schools across South Africa. Under the auspices of
the Muscular Dystrophy Foundation of South Africa,
'Ramping-up Hermannsburg School' will implement
state-of-the-art accessibility solutions that comply with
the National Building Standards for Persons with Disabilities
(SANS 10400-S:2011). We are dedicated to creating
a barrier-free environment that accommodates a spectrum
of mobility needs, from crutches and walkers to
manual and power wheelchairs. With the support of our
community and sponsors, we aim to extend our reach,
making every school a welcoming place for all.
By Erik Andersen
Erik Andersen's Commitment: As a parent with Limb-
Girdle Muscular Dystrophy and a wheelchair user, I understand
the importance of accessibility on a deeply
personal level. I am committed to leading the project in
creating an inclusive Hermannsburg School for all people
with mobility impairments. Yes, this project is about
constructing ramps and pathways but it's also about
fostering a community where everyone, no matter their
physical challenges, can participate equally and fully in
the vibrant school life.
Phase 1 paths to most used parts of the school and
ramps to the most accessed buildings. I have started
with ramps to the chapel first as many of the school
events happen here that I, as a parent, need to attend.
Here is a list of phase 1 projects:
• Ramp to and into the chapel - check!
• Path to the accessible toilet - check!
• Path across road connecting chapel and office -
under construction
• Broken path to the primary school classrooms and
accommodation
• Ramp into the primary school classrooms - coming
up
• Ramp to the dining room veranda
Estimated cost for phase 1: R40,000. Please consider
donating to make this project happen. There will be a
phase 2 and 3 of Ramping-up Hermannsburg School and
I am delighted that phase 1 is well under way!
Bank: Nedbank, current account
Acc no: 195 850 2049
Branch: Gauteng West
Code: 198-765

More about Hermmansburg School
Hermannsburg School, originally Deutsche Schule Hermannsburg, is a private school in Hermannsburg, KwaZulu-
Natal, South Africa. The Deutsche Schule Hermannsburg was established by German missionaries in 1856, making
it the oldest boarding school in the province, then Natal. Hermannsburg has English as its main language of instruction,
although it has an intense German language programme. Zulu language, as a subject, is also offered in
the school, as a second language alongside Afrikaans.
Order our mascot at only R150 each!
Name: Muscular Dystrophy Foundation
of South Africa
Bank: Nedbank, current account
Acc no: 195 850
2049
Branch: Gauteng West
Code: 198-765
Re: Merch & your name
Please email proof of payment to: nationalfinance@mdsa.org.za or gmnational@mdsa.org.za

VREDENHEIM ANIMAL FARM OUTING
By Samantha Muller
The Muscular Dystrophy children from Astra School had a fun-filled and educational day at Vredenheim Animal
Farm. During their visit, they met a variety of adorable farm animals and had the opportunity to feed and hold
some of them. Additionally, the children explored the play area and enjoyed a sponsored lunch.
TB AWARENESS DAY AT GOODWOOD CLINIC
By Samantha Muller
On 22 March 2024, the Social Work team of the Muscular Dystrophy Foundation Cape Branch was invited to join
other NPOs in raising awareness on TB Awareness Day at Goodwood Clinic. This event provided a great opportunity
to promote awareness of Muscular Dystrophy in our area.

Join the Journey and support the Akasia Athletics
Club in 2024
By Robert Scott
For three decades, the Akasia Athletics Club has been a cornerstone
of our community, nurturing a love of running since
1993. Known for hosting the dynamic Akasia “3-in-1” race and
the challenging Dawn to Dusk Circular and 100 Miler, this club
has been a beacon of endurance and camaraderie.
During their heyday until 2010, at least 50 members proudly
represented the club each year in the prestigious Comrades
Ultra Marathon. Although the club has seen its numbers dwindle
in recent years, their spirit remains undiminished. They
continue to organize thrilling races and events, actively engage
in community projects, and extend a helping hand to those in
need.
In an inspiring show of dedication, the Akasia Athletics Club
has committed their 2024 racing season to support the Muscular
Dystrophy Foundation of South Africa (MDFSA) Gauteng
Branch. This heartfelt initiative aims to raise hope and vital
funds for individuals affected by muscular dystrophy.
We urge you to stand with the Akasia Athletics Club in this
noble cause. Your support through donations and shares can
make a profound difference. Let's give them the strength to
keep running, and together, we can bring hope to those who
need it most.
For those who wish to support, please contact Robert Scott at
mdfgauteng@mdsa.org.za or call 011 472 9824.
Making a difference, one sticker at a time!
For many years, Casual Day has been a vital fundraiser
for MDF Gauteng, bringing together numerous organizations
to raise awareness about disabilities. This
event is a powerful opportunity to deliver a unified
message of inclusion and support to the public.
Each Casual Day sticker costs just R20, but every single
sticker sold contributes significantly to our cause. By
joining us in selling these stickers, you are helping to
create meaningful change in the lives of people with
disabilities.
If you would like to support us in this important mission,
please contact Robert Scott at mdfgauteng@mdsa.org.za
or call 011 472 9824. Your
participation can make a world of difference.

Little Heroes of Hope
By Robert Scott
For over a decade, a remarkable group of young children,
affectionately known as our "Little Heroes of Hope," have
participated in the 947 Kids cycling race. Their dedication and
spirit have become an integral part of our fundraising efforts.
In 2024, we aim to make this event our most successful yet,
especially with the exciting addition of our first-ever title
sponsor, Cool Tech!
This year, our Little Heroes have set an ambitious goal to
raise R20,000.00 before they participate in the Kids Race in
November. We are reaching out to the public for support to
help them achieve this target. Every donation brings us closer
to providing essential services to those in need.
Your support can make a significant difference. Donations not
only help us reach our fundraising goals but also contribute
directly to improving the lives of individuals affected by muscular
dystrophy. We are able to provide 18(a) tax certificates
for all donations made.
For more information or to make a donation, please contact
Mr. Robert Scott at mdfgauteng@mdsa.org.za or call us on
011 472 9824.
Join us in making 2024 a year of hope and support for those
affected by muscular dystrophy. Together, we can make a
difference.
Transforming a life
By Robert Scott
At MDFSA, our mission is simple . . . to improve the quality
of life for our members. Recently, one member expressed
profound gratitude for our assistance in helping
her acquire a mobility scooter.
The work you do at MDFSA is truly transformative, and I
am incredibly grateful to be a beneficiary of your kindness
and dedication. Your commitment to helping individuals
like me regain their mobility and independence is
commendable, and I am honored to have received your
support.
"I am writing to express my heartfelt gratitude for your
assistance in purchasing a mobility scooter for me. Your
generous support has truly given me the gift of independence,
and for that, I am deeply thankful. This newfound
independence has significantly improved my quality
of life and well-being.
Thank you once again for making such a positive impact
on my life. Your assistance has not only provided me
with a means of transportation but also a renewed sense
of hope and confidence."
These words capture the essence of our mission—to
empower and uplift. Our work is transformative,
providing not just assistance but to provide Hope.

Muscle Riders: A Decade of Determination and
Passion
By Robert Scott
Eleven years ago, in 2013, a group of dedicated cyclists came
together with a mission: to cycle for those who cannot. This
simple yet profound idea gave birth to the Muscle Riders.
While the concept might sound straightforward, the journey
has been anything but easy. Have you ever cycled 97km?
That's precisely what the Muscle Riders have been doing annually.
In 2023, they celebrated a decade of determination and passion
by participating in their tenth 947 Ride Joburg cycle
event. Each year, this team of dedicated riders not only takes
on this gruelling challenge but also rallies support for the
Gauteng Branch of the Muscular Dystrophy Foundation of
South Africa (MDFSA).
As we gear up for the 2024 race, we invite you to join us in this
noble endeavour. The Muscle Riders have always been supported
by a community of loyal backers who share our passion
for making a difference. Your interest and support can help us
continue our mission to bring hope and aid to those affected
by muscular dystrophy.
Whether you're an avid cyclist, a supporter of charitable causes,
or simply someone looking to make a difference, we need
you. Join the Muscle Riders in 2024, and let's pedal for a purpose
together. Your contribution, no matter how small, can
help us reach new heights and achieve our goals.
Support the Muscle Riders, and let's ride for those who cannot.
For more information, please contact the team leader, Mr.
Robert Scott, at mdfgauteng@mdsa.org.za or call us on
011 472 9824.
Follow the Muscular Dystrophy Foundation South Africa (MDFSA) on their social media platforms to stay
updated on their latest activities, events, and awareness campaigns. Here are their handles:
www.mdsa.org.za
Muscular Dystrophy Foundation of South Africa
Muscular Dystrophy Foundation of South Africa
Muscular Dystrophy Foundation of South Africa: Official blog
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