Hemophilia Society, Bangalore

Soumya GanapathyNagendra Singh

Hemophilia Aims to provide support and

assistance to people suffering from hemophilia.

Hereditary, x-chromosome linked clotting disorder.

Females are carriers. Males inherit the disease.

Treated by injecting the factors. Factors and Hemophilia types.

Hemophilia and Joints People with hemophilia can lead successful

lives with proper care, education, and financial support.

However, lack of knowledge/diagnosis, care and support can lead to disability.

Almost all hemophiliacs suffer from joint problems.

Vicious circle of joint injury, membrane cut, enzyme, cartilage, bone, more membrane cut, enzyme, …

Joints treated by Physiotherapy.

Hemophilia Society, Bangalore Hemophilia Federation of India (HFI).

Founded in 1983. India’s representative in World Federation of

Hemophilia (WFH). Has around 65 chapters. Details: http://www.hfindia.org

Hemophilia Society, Bangalore. Founded in 1992. Caters to hemophiliacs in Bangalore. Around 500 members Represents Bangalore in HFI. Secretary: Ranjana Ramchander. Contact details:

http://www.hfindia.org/node/32#karnataka.

Organization Structure President (Elected, Voluntary) Vice President (Elected, Voluntary) Treasurer (Elected, Voluntary) Secretary (Elected, Voluntary) Committee (Elected, Voluntary) Medical Advisors (Voluntary) Physiotherapist (Paid) Administrative Manager (Paid)

Hemophilia Society Activities Medical

Open clinic every ~6 weeks Physiotherapy Counseling

Financial Scholarships Micro credit

Others Picnic Advocacy Spreading Awareness

Activities (1)

Activities (2)

Activities (3)

Activities (4)

Activities (5)

Finances (Income) Financial Year April – March. Some of the major sources of income.

Donations. Individual contributions (biggest chunk) Danida Dennis Rehabilitation Fund

Interest from deposits Around Rs. 14Lacs (Rs. 1.4 million) in bank

balances.

Total: Rs. 815,890.00

Finances (Expenditure)

Some of the major expenses. Salaries Open clinic, Hemophilia Day, Regional

Camp, etc. Big chunk on misc. expenses.

Total: Rs.386,558.00 Excess: Rs. 429,332.00

Physiotherapist 1 full time position. Qualification MBBS (??) Works out society office in Bhagawan

Mahaveer Jain Hospital. Works daily and has around 10 – 15

visits per day. Salary around Rs. 7500 P.M. Works after office hours to make ends

meet.

Requested Financial Support

Should we fund the physiotherapist’s salary?

If yes, what should be the supported salary? Hemophilia Society requests 15,000 P.M.

($375 P.M. @ 40RS/$)

If yes, should it be a recurring support?

Support A Child (SAC)

ASHA, Seattle program which links donor’s funds directly to children.

Support medical, educational and financial needs of hemophiliac children associated with Hemophiliac Society, Bangalore.

Requested Financial Support

Do we approve the requested financial needs of the listed children?

Questions

Previous Project (Reviving Hope)

This is a sequel of an old project which has been funded since 2000.

The following slides try to capture the history of the project.

Previously…(Circa 2000) Detailed site report by Mr. Shanmuga.

Find it on the chapter website. Summary

Worked on getting treatment for two kids, from Chitradurga dist., at various institutions in Bangalore.

Funded through Bharathi Trust. Initial contact with Hemophilia Society –

Bangalore.

Previously…(Circa 2000)

People Chain Family in Shivaganga –> (Friend)

Siddamma (Coordinator Bharti Trust) -> Shanmuga (ASHA, Seattle) -> Jayashree (Bangalore) Prakash (Shivaganga updates).

Previously…(Circa 2001)

Update by Jayashree and Janardhan. Summary

Follow up to previous years work. One of the kids needs surgery to

straighten his leg. Action plan and funding info for that.

Previously…(Circa 2004)

Update by Jayashree. Chandramma’s family -- 3

hemophiliac children. Helping them finance their medical,

and educational needs. Also, helping them set up a business.

Previously…(Circa 2005)

Filed by Venky. People chain.

Venky -> Jayashree -> Prakash (source).

Updates on Shivaganga family. Two kids are doing well (healthwise).

Updates from Chandramma’s family. Financial requirements for next year.

Previously… (Financial summary)

Year Amount ($’s) Purpose

2001 2,000.00

2002 5,250.00

2003 5,300.00

2005 3,150.00

15,700.00

Questions

How much do the factors cost? Details of how the money was spent? What is the latest update on the two

families? What is Kuvempu trust? Why did we stop funding?