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HEMOPHILIA SOCIETY - BANGALORE CHAPTER
Activity Report
Year 2004-05

In our endeavor to create awareness and raise funds, the Hemophilia Society organized an event “Jagruti”- a dance programme by Ms Anita Ratnam on February 27, 2004 at Ambedkar Bhavan.  Various companies sponsored the programme. The performance was appreciated by all and was covered by all the major newspapers viz., The Hindu, Times of India, Deccan Herald, Prajavani and Kannada Prabha.

Early this year the Bangalore Chapter was adopted by Danida in their project “Living with Hemophilia in India”.  Under this project, they helped us to buy computer and office furniture and 50% salary for one of our office staff. By this, we found an opportunity to employ a full time physiotherapist- Mr.Siju K.Paul who has been trained by Dr.Alok Srivatsava under the WFH Programme at Vellore.  There has been good response for the physiotherapy treatment from our members. The treatment is done free of cost. We would very much like that all our members should make best use of this opportunity for their own betterment and feel the difference in their quality of life.

Under the Danida Project, we look forward to strengthen the Women & youth group to have more activities and psychosocial support for them to face life courageously in every aspect, physically and emotionally.

World Hemophilia Day was observed by having an Open Clinic on 17.4.2004.  Dr.Cecil Ross (Hematologist) and Dr.Pannish (Orthopedic Surgeon) examined the patients.  Dr.Rajalakshmi- Physiatrist of St.Johns Hospital and Mr.Siju examined and advised the patients.

Meeting for Women and Youth group was held on 18.7.04. Mrs.Sarojini Changkoti a hypno therapist and healer from Washington was a special invitee.  She spoke at length about relaxation techniques, mind and body connection where a calm and positive attitude can have a healing effect on the body.  She also counseled many of the women and youth. The talk was followed by physiotherapy

This year the British Airways grant for education support and medicine was given to Mubarak Pasha of Mandya, and Master Nutan from Coorg

G.L.Pradeep and Sanjay Tejasvi attended a youth camp held at Chennai. Peter Anthony Das from Chennapatna and Sudhakar from Bangalore attended another Youth camp held at Hyderabad.Youth camps consist of having group act with other pwhs; learning new things, take self-infusion, talent contests, checkups by doctors and general personality development.

Our General Secretary Mrs.Ranjana Ramchander participated in World Hemophilia congress held on 17-21st Oct-04 at Bangkok. 

AGM Meeting 21/11/04 Election held for electing officers bears of the chapter.

-2-
Mr.Ranganath, a student of MSW from Goutham College joined & completed his project work from Oct-04 to Dec 04.

Our general secretary had attended the meetings held by the Directorate of Drugs & Logistics Govt of Karnataka towards the purchase of AHF for pwh.

Our Chapter hosted South RCC Meeting on 30/01/05.

Youth camp at ITC Info Tec campus Bangalore was held on 05.02.05.The youth camp was organized by one of the major IT icons in Bangalore, ‘ITC InfoTech’ with the object of training the boys with hemophilia on basic software skill, like MS word and Paint. There were about 25 boys from the age of 8 yrs onwards, mostly students from primary class to college level. A few parents too had come accompanying their wards. After their particulars were recorded at the office, the boys trooped out and boarded the two vans parked in the hospital compound outside. Accompanied by volunteers, Miss Maheswari and Miss.Aswati, the group had a nice time at ITC INFOTECK PARK at Pulikeshi nagar Bangalore.

We had an open clinic on 21 Mar 05 when Ms.Judy Bagato –from St.Louis.visited Bangalore Chapter. She is a Nurse Coordinator, Center for Bleeding and Thrombotic Disorders, St Louis, USA. Speaking on the occasion, explained how hemophilia care was provided in a ‘comprehensive’ way at the American center where she was working. At the American center, all the problems faced by the patients were addressed by a team consisting of haematologist, pediatrician, psychiatrist, Physiotherapist, nurse and social worker. The visit had been arranged as part of the twinning programme between St Louis University, and St John’s Hospital/ Hemophilia Society for exchange of ideas and techniques for providing better care for hemophilia community. Dr Fulton D’Souza, Pediatrician, St John’s Medical College Hospital, Bangalore was a special guest in the open clinic.

We have presented a computer to Master Vishal-a cwh- for his outstanding performance in l0th standard by securing 85%.

We are very much indebted to Ms Deepa Rodericks for arranging free of cost, l9000 I us of AHF from Italy in July 04.

FOCA- an organization of volunteers is kind enough to sponsor for two pwhs a sum of Rs.7000 per month for anti retroviral treatment.

Apart from the donation received from “Jagruti”, we have also received donations from;
Rs.
Sarojini Damodaran trust                    92,000/-
Mr. APP Nair                                           500/
Mr. L Krishna                                        5000/-
Mr. SS Murthy                                         100/-
Ms Kasturi Shamsundar                      11000/-
Mr. Manjunath                                       1000/-
Ms Shreedevi                                         1000/-
M/sVarsha Agro industries                    1000/-
Mr KR Prasad                                        5000/-
M/a SOCTI                                              500/-
Clarence School                                  10000/-
-3-
Mrs. Vijaylaxmi                                     1001/-
Ms Kashmira Nair                                  5000/-
Mr Vijaykumar                                         200/-
Mr Jayanth Maney                               10000/-
Mr Nagraj                                               2500/-
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Total                                                   1,13,801/-
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Mr.Jayanth Maney from Atlanta, USA, has donated tube bandages for the use of society members.

We could raise a substantial amount of towards our Corpus Fund.

We were able to identify 53 new patients in the past year. Totally we have 376 registered patients with us.

The total consumption of medicine from April 04 to Mar 05 is as follows:

Factor –8-----------------------------------4,20,714 Iu.

Factor-9------------------------------------64, 712 Iu.

Feiba---------------------------------------61, 538 Iu.

Free Factor------------------------------20, 000 Iu. (F VIII & IX)
5,000 Iu.    (Fieba)

Lobbying with the government has been exceptionally successful both at the Central and State level.

Thanks to the Disability Copmmissioner’s Office and Mr.Pradeep Kumar, Asst.Commissioner of Disability, we have been able to mobilize the Govt to stock factors at DHOs and give it to the patient free of charge. This facility will be available all over Karnataka and we hope it will give great relief to our members.  Details of the distribution will be posted to the patient.

We all are committed to working for their benefit and we expect all members to cooperate, come for all open clinics, meetings, go through regular physiotherapy and improve their quality of life.

(Ranjana Ramchander)
Gen. Secretary.

Year 2005-06

A very warm welcome to all of you.  This is an occasion in a year when we have the opportunity to present you the events, activities and progress made during the past year.

Our last AGM was held on 2nd Oct 2005 at the Auditorium of Bhagawan Mahaveer Jain Hospital.  Our President Mr.Bhattyacharya explained the activities of the society and mentioned about the Govt grant for free factors to be supplied through Govt hospitals.
Mr.K.V.Ramachandra, our Treasurer read out the financial statement and placed the audited report for the perusal of the members. He thanked our auditors for their valuable service and advice and requested them to continue to help us in future also.

Dr.Surersh Hanagwadi, President HFI, Dr.Manjunatha H, Orthopedic Surgeon of Bowring Hospital was special invitees. Dr.Manjunatha was honored with a presentation of a memento.

Women’s meet on 5th Nov 2005 was attended by Ms.Dorthe and Ms Lise of DANIDA and Danish Hemophilia Society respectively.  Both of them also visited the families of Mst.Deepak and Mst.Vishal.  They were received with great enthusiasm and affection.

Participating in the women’s meet, Ms.Dorthe spoke about the treatment and support they give in her country and mentioned that despite the high cost of medicine, India was one of the countries where factor was available at the lowest price.  Ms Dorthe answered all the questions of our members with great patience and concern and instantly bonded with them

The meeting was attended by Mr. Ranjit Mukherjee ED HFI, Mr.Raghunandan, RC Chairman, (South) Mr.Rajkumar, Project Manager, HFI, Ms.Rosy Sujatha, Ms.Sheetal and Mr.Balasubramanian of HFI South

 A painting competition was held on 25th Nov 2005 in aid of the Hemophilic Society.

A CME was held at Kolar on 26th Nov 2005 organized by Mr.Devraj Urs Medical College, Kolar and co-sponsored by HFI Delhi and Hemophilia Society Bangalore Chapter was represented by its Vice President. Mr.K.V.Ramachandra spoke about the aims and objectives of how such a CME   can help in creating awareness and the medical team to update its knowledge on hemophilia.

World Disability Day was celebrated on 3rd Dec 2005 at St.John’s Hospital premises with enthusiastic participation of Doctors of the Pathology dept and arranged by Dr Karuna Rameshkumar.  Dr.Aravind Kasturi and his team of Doctors presented a puppet show which was enjoyed by all the children with hemophilia and thalaseamia.  Our Bangalore Chapter then presented the children attended with gifts.
On the same day Mr Vanitha Krishna distributed prizes on behalf of our Chapter to the children of Gnanakshi Vidyaneketan Public Hospital. 

-2-During the last week of January 2006 we conducted a benefit show of “Rang De Basanti” at Cauvery Theatre, Thanks to the Students of Xavier Institute of Management; Bangalore who helped us to organize the program.

On14th Feb 2006 I visited the Govt Hospital at Hasan and Mysore for facilitating the issue of AHF obtained from the Govt.  It was followed by a little lecture update by Dr Fulton to the Doctors at the Hassan Hospital.

We had a parents meet on 4th March 2006 at Jain Hospital where a team of Danish Delegates attended.  Our parents group explained the delegates the various problems both medical and financial and the assistance they received from the Bangalore Chapter. A painting competition was held on that day.

World Hemophilia Day   was celebrated on 16th April 2006. Mr.Ramchandra Gowda  Hon’ble Minister for Science and Technology Govt. of Karnataka was the Chief Guest. Dr.Suresh Hanagwadi, Dr.Manjunatha, Mr.Ashis Ballal former Olympic Hockey Player and a team of doctors from St. John’s Medical College were other invitees.  The meeting was followed by an open clinic and physiotherapy session by the visiting doctors.

Regional Summer Camp was held from 27th April to 1st May 2006.  35 children with hemophilia from different chapter of southern states and five volunteers had participated in a 5 day trip to Tippu Palace, Srirangapatna, Ramgamtittu bird sanctuary, Brindvan garden and later to Tusker Trails in Bandipur.

All participants enjoyed swimming, jungle safari, elephant ride and a film show. The Iskon temple at Bangalore was also on the itinerary.

We had an open clinic on 15th Sept 2006 for all the patients who wanted to consult Dr.Cecil Ross and Dr.Fulton.  Several physiotherapists both from St. John’s and Mahaveer Jain Hospital with Dr. Siju Paul of our Chapter attended to the patients.

An alternative healing therapy expert Mr.Balkrishna was invited on 12th Oct 2006 to counsel our patients.

As you all know the Anti Hemophilic factor is given free by Govt.  Hospitals in selected centers of Karnataka. In Bangalore, Victoria Hospital, Bowring Hospital and
K C General Hospital are stocking the factors.

Till date  2600 Vials of  factor  VIII,    80  vials  of factor IX ,  10  vials  of  Feiba
have been issued by the Govt hospitals

 

In the past year 73 new members have enrolled. This is a direct impact of the awareness amongst the general public, Doctors and hospitals.

 As on date our membership stands at 450 Nos.

-3-In the past year we have used

We have received Donations amounting to Rs.3, 84,185. Our Special Thanks to Mr.Seshathiri, Mr.L.Krishna and Mr..Nagaraj for taking personal interest in raising funds for our society. 

Our special thanks to Mr. Dennis who was with our society for about 6months.  He has contributed the cost of a sewing machine handed over to Mr. Ismail a pwh.  He also promised to contribute further sum of Rs.67, 000/- towards economic rehabilitation of the pwhs.

We are grateful to Mr.K.V.Ramchandra for his undaunted effort to bring the financial reports in time and his considered opinion and advice on all the matters pertaining to our society. 

Our thanks to Dr. Siju Paul Physiotherapist and Mr.Balasubramanian for their sincere service to our chapter.

I thank one and all of you for taking your time off and attending the meeting

Thank you

(Ranjana Ramchander)
Gen. Secretary.


Year 2007-08

A very warm welcome to all of you.  I am glad to present you the events, activities and progress made during the past year. I present to you the annual report for the year 2007-08.

The membership strength of our Chapter as on date is 555. Sixty members have enrolled during this period. Our last AGM was held on 4th November 2007 at Rajput Bhavan, Vasanthnagar, Bangalore – 52.  Financial reports were read out by Mr. K.V. Ramachandra and were approved by the members.

 Periodical Executive Committee meetings were held for the period from Nov 07 to date. 

We have issued 2,82,269 IU of factor VIII and 37,935 Iu of F IX, 17,000 Ius of FEIBA.

An EGM (Extra ordinary General Body Meeting) was held on 26/01/08 to amend the byelaws to elect Joint Secretary and additional members. Mr. Prem Alva has been elected as Joint Secretary and Mr. Ganeshram co-opted as EC member. EGM was followed by an open clinic. Dr. Manjunath counseled our members.  

World Hemophilia day was celebrated on 13/04/08 – 4 days in advance -by having a picnic to Sathanur, Muttati and Sangam. It was sponsored by FOCA and their 10 Volunteers helped us to conduct the picnic successfully.

A CME was held on 04/05/08 at Bowring Hospital, Bangalore. The Subject was “Recent Trends in Hemophilia Managements”. Doctors from St. John’s Hospital, Bowring Hospital, Manipal Hospital, Sanjay Gandhi Hospital and few Private practioners attended the meeting. Professors and lecturers of B.M. Reddy and Acharaya College of Pharmacy also attended the meeting.

On 2nd October 2008, an Open Clinic was held at Jain Hospital. Dr. Raja Parthiban, Professor of Pathology, Vaidehi Medical College, Bangalore spoke about increased usage of AHF and consequent increase in inhibitor members. Along with open clinic a physiotherapy session was held. Dr. Maheshwar of Jain Hospital attended to the patients.

An awareness campaign was held at the Lioness Club of Bangalore North Garden,Malleswaram ,on 8th Nov 2008. Dr.Raja Parthiban addressed the gathering and interacted with them.           

The benefit of Micro credit System introduced during last year is not fully utilized by our members. A few of those beneficiaries who availed the credit system are not prompt in their repayment of the loan. Unless we get back the repayment regularly it would be difficult for us to continue the scheme. So far 8 members availed the facility while one member has repaid the amount fully; two members are regular in repaying the loan.

I am glad to inform you that the following members have donated for our society;

Mr. Kochar                                       -        Rs. 20,000/-
Ms. Kasturi Shyamsunder       -        Rs. 11, 000/-
Mst. Utkarsh                           -        Rs.   2000/-
Mr. Naraynan                          -        Rs.   5000/-
Socio-Cultural Association     -        Rs. 10,000/-
FOCA                                      -        Rs. 18,760/-
Ms. Kalayani Divakar             -        Rs.    1000/-
Mr. Ganeshram                       -        Rs.    5001/-
Mr. Bhattacharya                    -         Rs. 10,000/-
LIC Agent Association            -        Rs.    8050/-
Mr. Shekar                              -        Rs. 10,000/-

I would like to emphasis the importance of timely attention and prompt treatment of the members whenever there is bleed or pain. This would save a lot of trouble and money and save life.        

With the best wishes to all of you.

Year 2008-2009

A very warm welcome to all of you.  I am glad to present you the events, activities and progress made during the past year. I present to you the annual report for the year 2007-08.

The membership strength of our Chapter as on date is 555. Sixty members have enrolled during this period. Our last AGM was held on 4th November 2007 at Rajput Bhavan, Vasanthnagar, Bangalore – 52.  Financial reports were read out by Mr. K.V. Ramachandra and were approved by the members.

 Periodical Executive Committee meetings were held for the period from Nov 07 to date. 

We have issued 2,82,269 IU of factor VIII and 37,935 Iu of F IX, 17,000 Ius of FEIBA.

An EGM (Extra ordinary General Body Meeting) was held on 26/01/08 to amend the byelaws to elect Joint Secretary and additional members. Mr. Prem Alva has been elected as Joint Secretary and Mr. Ganeshram co-opted as EC member. EGM was followed by an open clinic. Dr. Manjunath counseled our members.  

World Hemophilia day was celebrated on 13/04/08 – 4 days in advance -by having a picnic to Sathanur, Muttati and Sangam. It was sponsored by FOCA and their 10 Volunteers helped us to conduct the picnic successfully.

A CME was held on 04/05/08 at Bowring Hospital, Bangalore. The Subject was “Recent Trends in Hemophilia Managements”. Doctors from St. John’s Hospital, Bowring Hospital, Manipal Hospital, Sanjay Gandhi Hospital and few Private practioners attended the meeting. Professors and lecturers of B.M. Reddy and Acharaya College of Pharmacy also attended the meeting.

On 2nd October 2008, an Open Clinic was held at Jain Hospital. Dr. Raja Parthiban, Professor of Pathology, Vaidehi Medical College, Bangalore spoke about increased usage of AHF and consequent increase in inhibitor members. Along with open clinic a physiotherapy session was held. Dr. Maheshwar of Jain Hospital attended to the patients.

An awareness campaign was held at the Lioness Club of Bangalore North Garden,Malleswaram ,on 8th Nov 2008. Dr.Raja Parthiban addressed the gathering and interacted with them.           

The benefit of Micro credit System introduced during last year is not fully utilized by our members. A few of those beneficiaries who availed the credit system are not prompt in their repayment of the loan. Unless we get back the repayment regularly it would be difficult for us to continue the scheme. So far 8 members availed the facility while one member has repaid the amount fully; two members are regular in repaying the loan.

I am glad to inform you that the following members have donated for our society;

Mr. Kochar                                       -        Rs. 20,000/-
Ms. Kasturi Shyamsunder       -        Rs. 11, 000/-
Mst. Utkarsh                           -        Rs.   2000/-
Mr. Naraynan                          -        Rs.   5000/-
Socio-Cultural Association     -        Rs. 10,000/-
FOCA                                      -        Rs. 18,760/-
Ms. Kalayani Divakar             -        Rs.    1000/-
Mr. Ganeshram                       -        Rs.    5001/-
Mr. Bhattacharya                    -         Rs. 10,000/-
LIC Agent Association            -        Rs.    8050/-
Mr. Shekar                              -        Rs. 10,000/-

I would like to emphasis the importance of timely attention and prompt treatment of the members whenever there is bleed or pain. This would save a lot of trouble and money and save life.        

With the best wishes to all of you.

 

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