Hemophilia Society, Bangalore Soumya Ganapathy Nagendra 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 India’s representative in World Federation of Hemophilia (WFH). Has around 65 chapters. Details:  Hemophilia Society, Bangalore. Founded in Caters to hemophiliacs in Bangalore. Around 500 members Represents Bangalore in HFI. Secretary: Ranjana Ramchander. Contact details:

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

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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,  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 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. ($375 40RS/$)  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  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) YearAmount ($’s)Purpose 20012, , , , ,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?