Brain Tumour Foundation of South Africa

Survivors Invitation

2012-02-15T10:36:00.000-08:00

Deirdre Kohler will be the guest speaker at the Relay for Life function in Port Elizabeth on 9 March 2012. Based on last year's attendance, 1000 people are expected to attend. For more details email info@braintumour.co.za

WSSFN Congress Cape Town

2011-11-15T06:29:00.000-08:00

The WSSFN Congress takes place in Cape Town from 20 - 24 November 2011. This congress is for the World Society for Stereotatic and Functional Neurosurgery. The Brain Tumour Foundation has been invited to exhibit and this is significant as we are the only charity represented.

It has been a challenge raising funds to get to the event. We have free brain tumour magazines, information on latest technologies as well as getting to know who the international doctors are.

Fortunately so far we have received the stand for free and a free dinner for the opening function from the organisers. We have also got free accommodation at The Commodore Hotel for 5 nights. Their accommodation is reasonably priced but the real bonus is that it is on the Waterfront in Cape Town!

None of our 'staff' get paid at this stage and most of the work Deirdre has done to date has been free. Thank you so much for the help thus far, if any one can offer donations, car hire and flights, it would be much appreciated.

Also, iRapid Consult is offering discounted professional opinions on MRI's and I will be writing about that shortly once we have finalised the arrangements.

"Think A Head" 'Fun'draiser and Awareness photo shoot

2011-11-01T23:59:00.000-07:00

FREE FUN FUN!! Come to our booth and take free photos!

11 - 13 November 2011 : Brain Tumour "Fun"draising Photo Shoot
Theme: "Think A Head"

Place: Dulce Walmer Park, Port Elizabeth

Amuse: Free photos and lucky draws. Bring a hat and / or wig or use one of ours! All pictures can be downloaded or our website.

Donations: Please have your photo taken and donate to our foundation and take part in our raffle.

Price: FREE and all donations go to BTFSA

We will have brochures and information for any who want to know more about brain tumours or our foundation. Deirdre Kohler's book will be on sale at a special promotional price of R100. www.deirdrekohler.com

More information to be updated shortly, please call Deirdre on 083 380 3725 or email info@braintumour.co.za

Thank you to our sponsors:

www.amuse-me.info or Facebook: http://www.facebook.com/pages/-amuse-/213126455377970

And the renovated under new management Dulce Walmer Park, Port Elizabeth

http://www.dulce.co.za/stores/eastern-cape/walmer-park/

Fun fundraising events coming up!!

2011-11-01T06:02:00.000-07:00

We are having an photo booth event at Dulce Cafe Walmer Park from 11 - 13th November. You will be able to have FREE photos taken we just ask you to please give a donation the foundation. All pics will be available electronically via Facebook, email or BBM. Deirdre Kohler will also have her book for sale at a special price for R100 of which R10 goes to the foundation. It is great as a gift for Christmas!

Bring your friends, take a few photos, donate to our cause, buy a signed book and have a delicious cup of coffee from Dulce if you like!

The BTFSA has raised through donations R3000 so far for Wade, a patient who is looking for financial assistance to help with this treatment costs. We thank all of those who have donated. We will shortly be handing the money over with a newspaper article.

If anyone wishes to donate to the foundation, please email info@braintumour.co.za

Brain Tumour Fundraiser Tea Party 22 October 2011

2011-10-26T02:07:00.000-07:00

Hi all!

Just to say that our Tea Party was a big success and fully booked! It was extremely encouraging to see that there were 7 brain tumour survivors that partook in the festivities. We had MANY sponsors of vouchers and prizes and I feel it is only fair that we mention their efforts. I will be putting their details on our "Supporters Page" in a few days once we have confirmed their information. Just to mention it was also my Grandmother's birthday- Auriol McMahon.

Thank you SO much!
d:)

Support businesses supporting us

2011-10-04T01:28:00.000-07:00

We appreciate businesses who support the foundation. We give these businesses exposure because we understand that they too need to earn income.

There are many ways in which a business can support us:

Donating funds
Purchasing books of which a 10% goes to the Brain Tumour Foundation
Supplying gifts at functions
Hosting a benefit function
Paying for materials
Travel costs

We do not ask for any particular amount, just what the business can afford. Please would our members support these companies where they can.

Businesses who support us:

Lynn Page & Associates : Training and development of people programmes & processes donated printing for the foundation. www.lpasolutions.co.za Call Lynn 082 654 9834

Cornerstone Architects : Architecture and Design Company donated travel expenses www.cornerstonearch.co.za Call 041 581 1617

Raise our numbers...

2011-09-06T00:15:00.000-07:00

We are wanting as many people to join our cause. It is quite simple, just add yourself to the cause (it uses your Facebook account) Please if you are a patient or involved with a brain tumour patient in some way, please register under "become a member" This way we can send you updated information. The more people who follow us, the easier it is for us to raise funds for patients awaiting treatment.

Awareness events coming up :
16th September : Port Elizabeth Radison - Deirdre Kohler guest speaker to the business chamber
30th September: Cape Town : Venue to be confirmed - fundraising benefit tea for patient

Article by Denis Strangman from IBTA

2011-09-04T10:31:00.000-07:00

VISIT TO SOUTH AFRICA

Click here to return to the main webpage for the IBTA.

During 22-30 August 2011 the IBTA Chair Denis Strangman visited South Africa at the invitation of Deirdre Kohler who had recently established the Brain Tumour Foundation South Africa (BTFSA), which is a patient support, education and advocacy group. The main purpose of the visit was to participate in the 15th National Congress of the SA Society of Clinical & Radiation Oncology (SACRO) and the SA Society of Medical Oncology (SASMO). The Congress was held in conjunction with the Oncology Nursing Society and the Oncology Social Work Society and other related bodies. Close to 1,000 delegates attended the meeting held at Sun City, located about two hours drive from Johannesburg.

Wih the assistance of MSD Oncology the BTFSA had a booth in the exhibition area where Deirdre displayed her book "Brutal Honesty" which charts her journey with an oligodendroglioma brain tumour and distributed brochures promoting the BTFSA. Denis displayed copies of the 2011 edition of the IBTA magazine Brain Tumour and the monograph jointly written by him and IBTA Co-Chair Kathy Oliver about the first recorded operation for a glioma.

Many delegates visited the display and took free copies of the IBTA magazine and monograph and bought copies of Deirdre's book for a donation of 100 SAR to the Foundation. Visitors to the display booth came from all major areas of South Africa and nearby countries such as Bostwana, Zimbabwe, Malawai, the Seychelles and Mauritus.

The BTFSA display with IBTA posters promoting the International Brain Tumour Awareness Week (30 October - 5 November) and the Walk Around the World
for Brain Tumours.

Deirdre Kohler (L) with some of the Conference delegates who attended the BTFSA display area.

Deidre spoke about her journey at a nurses' session and also spoke about her journey and the Foundation at a social workers' session. Denis gave two presentations on clinical trials and the results of the 2010 IBTA survey on patients' and caregivers' attitudes also to the social workers' session. The presentations were well received.

Some of the audience at the social workers' session, which was a "full house".

Some 100 visitors to the booth left their contact details for on-going communications from the BTFSA and the IBTA. It was obvious that there is a great desire for information.

Denis with a participant from Malawai.

Deirdre (L), Ms Nicolene Andrews (Chair of the Social Workers' Session), Denis.

Deirdre speaks at the Nurses' Session, with Chairs Ms Dora Busang and Ms Rowan Robinson.

Following the Conference Deirdre and Denis met with Professor Barry Kistnasamy and staff at the National Cancer Registry in Johannesburg. There have been problems with the collection of cancer statistics in the past, principally over the question of confidentiality in a country which has an exceptionally high rate of HIV/AIDS. New legislation introduced by the Health Minister on 26 April 2011 requires all doctors and health facilities who confirm cancer cases to report their findings to the National Cancer Registry. The registry will therefore be more of a pathology-based registry than a population-based registry. From our discussions with practitioners and others it is estimated that only 350-380 South Africans each year receive the standard of care for their malignant primary brain tumour. This contrasts with an estimated but unrecorded annual figure of 3,000 people with such tumours. Clearly, many people are either undiagnosed or cannot afford proper treatment. There is an urgent need to work towards a more realistic calculation of the incidence of brain tumours so that this unmet need can be statisatically identified.

A visit to the National Cancer Registry. Deirdre's architect husband James is in the middle. James assisted at the Conference display and accompanied Deirdre and Denis to their meetings.

As well as visiting several pharmaceutical companies in Johannesburg a meeting was held with officials of the South African CANSA Society, which is the national cancer control organisation similar to the American Cancer Society, the Cancer Council of Australia, and the Macmillan organisation in the UK. The nature of brain tumours and the proposed work of the BTFSA was explained and tentative plans were discussed for collaboration between the two bodies.

L-R Denis Strangman (Chair IBTA), Sue Janse van Rensburg (CANSA CEO), Prof Michael C Herbst (Executive Manager Advocacy), Magdalene Seguin (CANSA Clinical Specialist), Deirdre Kohler (BTFSA).

Denis and the Kohlers also took time to meet up with Professor Riette J Eiselen (second from left) in Johannesburg who has promised to help Deirdre in promoting the Foundation. Riette's son has a Pineal brain tumour.

Conclusion: The major health issue facing South Africa is HIV/AIDS, which tends to dominate the health picture. The taxation base on which to fund government services is small. What others might regard as the standard of care in developed countries is only available in the private sector via health insurance schemes or by direct payment. Specialists are few and far between in a country of 50 million people. One key speaker at the Conference stated that the time for "explicit priority setting has come". In the scramble for scarce resources it is vital that brain tumour patients do not continue to be undiagnosed and untreated. As a kind of "band aid" measure we must ensure that brain tumour patients who enter the end of life stage with no proper diagnosis or treatment (possibly the majority) should have full access to the medications specific to brain tumour care, such as dexamethasone for brain swelling, anti-seizure drugs, and morphine for pain control. This implies that in addition to working for more accurate cancer statistics some form of outreach should be made to the community health services that look after these people at the end of life.

Denis Strangman
4 September 2011

SASCRO / SASCRO Congress 2011

2011-08-27T15:26:00.000-07:00

The Brain Tumour Foundation received great exposure at the SASCRO / SASMO congress... More information on the conference, sponsors and results coming soon...

Beliefs

2011-01-21T01:59:00.001-08:00

A patient has the right to accurate and up to date information
Patients have the right to a second opinion or to choose their best treatment path
Family members are part of the journey and have right to the information and support
Medical teams should share all relevant information with the family and patients openly and honestly.