Hemophilia Society, Bangalore

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Hemophilia Society, Bangalore

• Soumya Ganapathy
• Nagendra Singh

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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.

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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.

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Hemophilia Society, Bangalore

• Hemophilia Federation of India (HFI).
• Founded in 1983.
• Indias 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/32ka
  rnataka.

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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)

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Hemophilia Society Activities

• Medical
• Open clinic every 6 weeks
• Physiotherapy
• Counseling
• Financial
• Scholarships
• Micro credit
• Others
• Picnic
• Advocacy
• Spreading Awareness

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Activities (1)
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Activities (2)
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Activities (3)
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Activities (4)
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Activities (5)
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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

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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

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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.

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Requested Financial Support

• Should we fund the physiotherapists salary?
• If yes, what should be the supported salary?
• Hemophilia Society requests 15,000 P.M. (375
  P.M. _at_ 40RS/)
• If yes, should it be a recurring support?

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Support A Child (SAC)

• ASHA, Seattle program which links donors funds
  directly to children.
• Support medical, educational and financial needs
  of hemophiliac children associated with
  Hemophiliac Society, Bangalore.

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Requested Financial Support

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

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Questions
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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.

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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.

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Previously(Circa 2000)

• People Chain
• Family in Shivaganga gt (Friend) Siddamma
  (Coordinator Bharti Trust) -gt Shanmuga (ASHA,
  Seattle) -gt Jayashree (Bangalore) ? Prakash
  (Shivaganga updates).

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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.

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Previously(Circa 2004)

• Update by Jayashree.
• Chandrammas family -- 3 hemophiliac children.
• Helping them finance their medical, and
  educational needs. Also, helping them set up a
  business.

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Previously(Circa 2005)

• Filed by Venky.
• People chain.
• Venky -gt Jayashree -gt Prakash (source).
• Updates on Shivaganga family.
• Two kids are doing well (healthwise).
• Updates from Chandrammas family.
• Financial requirements for next year.

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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
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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?