The HFU has a new leader

Dear All,

Joseph Ssewungu (father of Jovan) will be spearheading the HFU henceforth. Its been a long wait but I am glad that Joseph has come forward and that the HFU is in safe hands.

Personally, being an expat in Uganda, though I knew that one day I would have to leave Uganda and the baton would need to be passed on to someone in Uganda, I never expected it to be as quick as it eventually turned out.

Alls well that ends well, I guess.

I request all of you to extend the same co-operation and support to Joseph so that he may take the HFU forward.

Warm regards,

Satish

Handover process (Radio talk show, First lady) & handover!

Hi All,

I have been planning this for a long time now but did not get to it. I guess I was trying to avoid writing in and really did not want to face the reality that I would be less active in the HFU.

We were to leave Uganda on June 25, 2008 and the activities undertaken / goals achieved are as follows:

1. Radio Talk Show on Radio One on June 21, 2008 @ 0800 hours

  Henry Ddungu had a talk show running on Radio One that used to focus primarily on Malaria. 

On June 21st, we got an opportunity to present haemophilia. Henry, Joseph and myself participitated.

Henry devised a unique 'human' approach. 

Pursuant to his plan, we started off with Joseph and me sharing our experience of how we learned

that Jovan and Adwaiy were hemophilic and our experiences.

The show was a success with the RJ telling us that never before he had so many people calling in.

2. Tried to enroll the First Lady of Uganda, Mrs. Janet Kataha Museveni

When the possibility of having to leave Uganda loomed large, I tried to enroll the First lady in the 

cause.

Through a letter written on June 6th, I tried to gain an appointment with her ladyship.

However, given her ladyship's itinerary, the meeting did not materialize before I left.

3. Handover Meeting at residence on June 24, 2008

A luncheon meeting was organized on June 24, 2008 at my residence, with Dr. Nzaro, Dr. Henry Ddungu

and Aisu Steven in attendance, apart from yours truly.

  All papers relating to the HFU and all details of contacts developed for the HFU were handed over to 

them.

  Attached are some pictures taken at the meeting. Ironically, I bought the camera primarily for taking 

pictures of PWHs HFU, in India and bought to Uganda on June 23 (two days before leaving).

4. I cannot conclude without a mention of the unique way that Sudhir Suvarna from Australia wanted to

contribute to the HFU. On his daughter's birthday, he got his daughter what she wanted and requested

that no presents be given but cash contributions be given, to be forwarded to the HFU. He managed to 

collect $ 300.

Though this did not bear fruit, the thought in itself is commendable. Kudos to you, Sudhir!

I am sure Henry, Aisu, Dr. Nzaro and the others will carry the torch and the HFU will bring smiles to PWHs

in Uganda.

From left - Aisu Steven, Dr. Henry Ddungu & Dr. Easu Nzaro

From left - Aisu Steven & Dr. Henry Ddungu

From left - Dr. Henry Ddungu & Dr. Easu Nzaro

Aisu Steven & Satish

MoM - HFU's second meeting

Since this MoM is posted today, it contains whatever progress has been achieved.

Date: Friday May 16, 2008

Venue: Hotel Africana, Kololo, Kampala

Attendees:
Dr. Esau Nzaro, Head - Clinical Laboratories, Mulago Hospital
Dr. Henry Ddungu - Haematologist, Mulago Hospital
Aisu Steven - Technologist, Medical Laboratory, Mulago Hospital
Augustine (Joseph) Sewwungu - Father of Jovan [Person with Haemophilia (PWH)]
Satish Pillai - Father of Adwaiy (PWH)

Absent:
Dr. Francis Ssali, JCRC
Dr. Joel Kiryadwire, Surgeon, Mulago Hospital
Dr. Susan Nabadda-Ndidde, Haematologist, Mulago Hospital
Winnie Nuwamanya - Occupational Hygienist, Dept. of Occupational Safety & Health, Ministry of Labour

Agenda:
1. Progress on following points from previous meeting:
- 'Diagnostic Equipment needed'
- List of doctors
- School committee meeting dates
- Radio Talk shows
2. Dr. Ssali - PWHs he attends to
3. Project Share
4. HFU logo
5. Website
6. Arua boy - probable third PWH

1. Diagnostic Equipment:
Though this was Aisu Steven's responsibility and he had done homework, Dr. Ddungu shared
that JCRC (Joint Clinical Research Centre) has recently acquired an ACL 8000 machine. JCRC
also has ordered for factor VIII & factor IX reagents which have not yet been received. This
opens up the possibility of getting PWHs diagnosed. However, JCRC will charge for the same
being a private organisation.
Hence, while PWHs can be tested now, we will still need to procure equipment because of the
charge involved.
Nevertheless, this is a big relief since we can start reaching out to people.
If a machine is procured and stationed at Mulago Hospital, the poor can avail of free testing
and this is important as people who come from up country may need assistance in
accommodation for a day. This and the testing charges, in all probability, will land in the
Foundation's lap.
Aisu arranged for a visit to JCRC to see their testing equipment for the 22nd May 2008.

2. List of doctors - Winnie was absent and hence no progress on this front

3. School Committee Meeting dates
Joseph found out that the 'Kampala Headmasters Union' was to meet at Kitante Primary
School on 20th May 2008.
Satish attended the meet and addressed the gathering. The basic intention was to spread the
word, which was done without going into technicalities of Haemophilia. It was only mentioned
that Haemophilia was a genetic life-long bleeding disorder and what the Foundation aims at
achieving.

4. Radio Talk Shows
Dr. Ddungu said that it would take some more time.

5. Dr. Ssali - since Dr. Ssali was absent, we could not get this information. Dr. Ssali was
misinformed about the date and believed that the meeting was on Thursday.
However, Satish spoke to Dr. Ssali on 22nd May and Dr. Ssali said that he sees about 10
PWHs. The most shocking truth is that most of the PWHs are handicapped due to lack of
factors.
Dr. Ssali is very keen to join us and will be present for the next meeting. He reschedules his
appointments so that he can attend the meetings. We find that very commendable.

6. Project Share - It was decided to apply for factor donations from 'Project Share'. Satish to
probe this further. However, this may be only possible after NGO registration and getting
permission from Ministry of Health (MoH).

7. HFU logo - It was decided to see 3 - 4 samples of the logo and then decide on which one to go
with.
Satish has contacted the designer to achieve this. We should be having the samples on
Thursday, May 22nd.

8. Website - It was decided to go ahead with the website.

9. Arua boy - Paul Dramaga
This information was shared and it was decided that Paul's guardians would be advised to get
Paul to Kampala (once the reagents are procured by JCRC) so that the diagnosis may be done.
Possibly, we would need to arrange for Paul's stay here.

The meeting adjourned and the next meeting is scheduled for Friday, May 23, 2008 at the same time and venue.

Third possible PWH

Hi All,

The news article has worked.

I got a call from Brian from Arua District, which is in the North-western part of Uganda, bordering the Democratic Republic of Congo. Brian has a nephew, Paul Dramaga (4 year old), who bleeds excessively and the only control they have is to stop him from playing. What a life the poor kid lives!

If we can impact one such life and enable him to have a normal life, I would consider our work justified.

Regards,

Satish

Article about the 'Haemophilia Foundation of Uganda' in 'The Monitor'

HFU's first meeting

Date: Friday May 2, 2008

Venue: Hotel Africana, Kololo, Kampala

Attendees:

Dr. Esau Nzaro, Head - Clinical Laboratories, Mulago Hospital

Dr. Henry Ddungu - Haematologist, Mulago Hospital

Dr. Susan Nabetta -Ndidde, Haematologist, Mulago Hospital

Aisu Steven - Technologist, Medical Laboratory, Mulago Hospital

Winnie Nuwamanya - Occupational Hygienist, Dept. of Occupational Safety & Health, Ministry of Labour

Augustine (Joseph) Sewwungu - Father of Jovan [Person with Haemophilia (PWH)]

Satish Pillai - Father of Adwaiy (PWH)

Absent:

Dr. Joel Kiryadwire, Surgeon, Mulago Hospital

Rachel Kabejja, Reporter, The Monitor

Agenda:

1. Diagnostic Equipment needed for testing

2. How do we create awareness and reach out to people?

1. Diagnostic Equipment:

The topic was discussed and it did not require much long to arrive at the conclusion that there is no equipment in Uganda to test patients for Haemophilia.

Aisu Steven was given the responsibility to list out the equipment that would be needed + the consumables. He would work on this over the weekend and revert. Satish would then work on getting this equipment to Uganda. This will be done before the next meeting.

2. How do we create awareness and reach out to people?

The answers arrived at were:

i. Newspapers - Since we already have The Monitor covering us, we would wait for the effect that this has and then probably look at the other newspapers.

ii. Radio & TV talk shows - Dr. Ddungu has volunteered to arrange for a talk show in one of the stations. This should happen in 4-5 weeks time.

iii. Schools - Joseph is a member of the 'Teachers Union' and the 'Headmasters Union'. The schools will open for the next term in May and would have meetings prior to the opening. It was decided to have fliers ready and to distribute them at these meetings.

Joseph to find out the specific dates and Satish to have the fliers ready.

iv. Doctors - Even though Doctors register with the Medical Council, the opinion expressed by the doctors were that the Council does not have an updated database. Hence, reaching out to doctors would be carried out on an 'as and when we get a doctor's details' basis. Reaching out to the doctors in Kampala will not pose a problem but reaching out to remote parts of the country will pose a real challenge.

Winnie, due to the nature of her work, has details of many doctors, which she will pass on and we shall write to them, for a start.

v. Existing Haemophiliacs - Dr. Ddungu knows three (3) PWHs, of which one is Jovan. The other

two come from far. Unfortunately, he did not have the contact details off-hand, but would have the records checked up at Mulago and we would reach out to them. Testing of the PWH's siblings, their relatives will need to be done. However, this can only be attempted after procuring the equipment.

Joseph mentioned that Jovan's maternal grandfather passed away due to uncontrolled bleeding after an accident.

The meeting adjourned and the next meeting is scheduled for Friday, May 16, 2008 at the same time and venue.

Registration as a non-profit and update on progress

We are now a registered non-profit organization. Also, I met Donald Kasule, who will design our website for free. We will need to put up the hosting charges though. Thanks Donald, your contribution will ensure that our very limited resources run that much longer. Also, 'The Monitor' will cover 'Haemophilia' and 'Haemophilia Foundation of Uganda' in their health supplement. This should appear in Thursday's edition. A scanned copy of the article will be put up on teh blog.

The first step is over and the next would be registering with the NGO board (this one will be tedious) and then becoming the NMO for the WFH. Then, of course, the permissions from the Ministry of Health for importing the factors into Uganda. In the meantime, we will need to squeeze in setting up an office, getting a computer, etc.

Setting up is sapping and pushes the most important area - field work, into the background - creating awareness that there is a foundation which haemophiliacs in Uganda can turn to, unearthing haemophiliacs (since there is no official record), etc. More on this in the next blog, which records our first meeting.