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Hemophilia Society, Bangalore

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.

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Hemophilia Society, Bangalore

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  1. Hemophilia Society, Bangalore Soumya Ganapathy Nagendra Singh

  2. 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.

  3. 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.

  4. 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.

  5. 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)

  6. Hemophilia Society Activities • Medical • Open clinic every ~6 weeks • Physiotherapy • Counseling • Financial • Scholarships • Micro credit • Others • Picnic • Advocacy • Spreading Awareness

  7. Activities (1)

  8. Activities (2)

  9. Activities (3)

  10. Activities (4)

  11. Activities (5)

  12. 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

  13. 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

  14. 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.

  15. 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?

  16. 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.

  17. Requested Financial Support • Do we approve the requested financial needs of the listed children?

  18. Questions

  19. 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.

  20. 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.

  21. Previously…(Circa 2000) • People Chain • Family in Shivaganga –> (Friend) Siddamma (Coordinator Bharti Trust) -> Shanmuga (ASHA, Seattle) -> Jayashree (Bangalore)  Prakash (Shivaganga updates).

  22. 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.

  23. 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.

  24. 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.

  25. Previously… (Financial summary)

  26. 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?

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