MDF NATIONAL: 2014 AGM

CHAIRMAN’S REPORT

Good morning everybody and welcome to the MDF National AGM. It is my privilege to welcome you to the Gauteng offices of the MDF.

Before I go any further I would like to thank our host, the MDF Gauteng branch and the staff of the National office for all the arrangements. Thank you to Rae Bagus and Pieter Joubert in taking the lead in the arrangements

This year has been very rewarding year for the MDF and I am proud to say that the National office of the MDF has progressed with leaps and bounds in pursuing and implementing its strategic goals. This has not come without its challenges and, as ever, the biggest of which is funding. When the staff, committee members and volunteers have the energy and passion to push forward, the stark reality of tight budgets and risk of unsuccessful fundraising always sits in the back of one’s mind.

2014 marks the 40thanniversary of the MDF and it is with pride that I can say that I am part of a dynamic, motivated and passionate team. We give acknowledgment and thanks to the founding members of the MDF and I specifically want to thank the NEC and staff members of the MDF for the enormous effort that each every person put into the organizations work, as without you, the MDF will not be able to do the work it does.

Strategic goals:

  1. Member database – Support our existing database of members and finding people affected with MD in rural, under developed and underprivileged communities;

1.1.This posed a very real challenge for the MDF since many of affected people live in rural areas and may not have access to information. To this end we launched a case study rural survey in the kwaNgwanase rural community in the KZN area. A delegation from the national office visited the area for a week, meeting with community leaders, clinics and schools. The project proved to be very successful and in the few days of the visit, our team identified 10 people suffering from MD not previously noted on our database.

The successful outcome of this project will pave the way our branches approach this goal in order to reach out into these communities. These projects are however very cost intensive and the NEC together with Branches needs to identify strategic partners in assisting with this initiative.

1.2.The MDF has continued providing subsidy funding to the three branches to the value of R25000 per month (R10000 for overheads and R15000 for the appointment of a social worker). Given the fact that the MDF National office is not mandated for operational (regional) activities, the NEC feels strongly about this funding initiative since it empowers and financially assist the branches in fulfilling its mandate to provide counseling and support to our members. Although this funding is placing financial pressure on the MDF National budget, the NEC is confident that this project is fundamental to achieving its goals and achieving our most important mandate; that of serving our members. It is the NEC’s aim to continue with this initiative as long as possible and intend to focus on national fund raising efforts to finance this and hopefully an expansion of this initiative.

1.3.The NEC acknowledged that achieving the awareness levels in all rural areas in our country, we have to partner with government departments and for this reason we have engaged with the National Department of Education as well as National Department of Health in order to secure formal channels to reach our members in rural areas through schools, hospitals and clinics. This process is underway and we hope to achieve some progress through collaborative processes with them.

1.4.Through sponsorship from Genzyme Sanofi Aventis, we have developed a MDF patient registry, which will form part of the process of identifying and placing affected members on a database.

1.5.Central management of database through the development of reporting templates from branches to national on a monthly basis.

  1. Awareness – Increased awareness through different media sources including social media
  2. Breaking down the barriers of stigma, discrimination and lack of knowledge remains and obstacles and we are actively using broadcast and printed media to get the message out. To this end, our Deputy Director conducted monthly television and radio interviews and we require our branches to regularly place newspaper articles and advertisement. We have developed and use various video and voice recordings which are sent to broadcasters.
  3. We attempt to keep our website up to date and encourage our members to interact with the various social media platforms created by branches and sub committees.
  4. We continue to publish the very popular MDF magazine, which carries stories of good news, hope and information to our members as well as key stakeholders, donors and supporters.
  5. We have actively engaged and participated in the disability rights calendarthrough affiliations with national disability organizations, conferences and interaction with Government working towards the lobbying for rights for people with disabilities.
  6. Development and distribution of awareness material forms an essential part of the strategic goal and we have developed the following documentation translated it into 4 languages for distribution to communities. Application was made to the department or Basic Education for the printing and distribution of these documents, and we intend to follow up on this initiative as we believe we have to utilize the systems provided for in Government.

This

MATERIAL / LANGUAGE
English / Zulu / Xhosa / Afrikaans / Sesotho
Caring for children with muscular dystrophy / √ / √ / √ / √ / √
Your support means hope; What is MD / √ / √ / √ / √ / √
How to use your battery powered wheelchair / √ / √ / √ / √ / √
How to use your manual wheelchair / √ / √ / √ / √ / √
Stress management / √ / √ / √ / √ / √
What is Duchenne Muscular Dystrophy (affecting children) / √ / √ / √ / √ / √
What is Spinal Muscular Atrophy / √ / √ / √ / √ / √

2.6.Development of partnerships is an essential ingredient in the success of these campaigns and to this end we have reached out to all major charity organizations, Government departments and stakeholders. We believe that these relationships will render benefits and advantages in the future.

  1. Fund Raising
  2. We firstly want to acknowledge and give thanks to one of our biggest source of income and long-standing partners in fundraising. Crossbow has been a pillar of strengths for more than 25 years. Through their unwavering support, the income generated by them allows us to work towards the goals of our organization, and we see this partnership as essential to our survival. We thank Crossbow for this support and hope that our relationship will continue well into the future.
  3. The NEC has taken the decision to invest in an increase in fundraising efforts and appointed a dedicated fund raiser. Rae Bagus joined the office last year and has worked hard at building relationships and networks in order to improve our income status.
  4. Our annual Lottery applications continue, and we appreciate give thanks to the National Lotteries board for the allocations made to the MDF over the years
  5. As part of a much bigger fund raising effort, we have embarked on a national direct mail campaign, which we hope will generate a stable and continual income for the MDF.
  6. Sound administration & Governance
  7. This is a must for any NGO and we have strengthened our administration and governance through the implementation of policies and procedures. These include:

Human Resource:

i) Contract of employment

ii) Code of NPO SA

iii) Disciplinary enquiry record

iv) Written Warning

v) Grievance procedures

vi) Disciplinary Code

vii) Counselling Interview

viii) Counselling record

ix) Indemnity General

x) MDFSA Vehicle policy

xi) Notice of Hearing

xii) Procurement Policy

xiii) Vol. 1 2013 P001 Staff Policy

4.2.Finance, Governance, Administration and Unique service Policies have also been finalized with a few amendments to be done before circulation.

4.3.We continually ensure that we are compliant with the requirements of the Department of Social Development, SARS and our donor requirements, which is an essential part of protecting the NGO & PBO status

4.4.We are proud to present to you today clean audited financial statements, which is evidence of the measures taken and compliance throughout.

  1. General
  2. I am sad to announce that our Deputy Director Precious Chiutare has resigned effective August 2014. We wish her well in her future endevours and also thank her for the hard work done the last few years. We are busy with the interview process to fill this position as we need to ensure continuity and momentum to continue.

I would like to congratulate and thank the members of the national executive committee that have served this year. You showed courage when difficult decisions had to be made and persevered with the implementation of these decisions. It has been a privilege serving with you.

To Win, Zenzele, Lee, Maxine, Noel, Raj, Jan and Tommy, thank you.

To the staff in the national office, thank you