Hemophilia Society, Bangalore

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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. - PowerPoint PPT Presentation

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<ul><li><p>Hemophilia Society, BangaloreSoumya GanapathyNagendra Singh</p></li><li><p>HemophiliaAims 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. </p></li><li><p>Hemophilia and JointsPeople 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. </p></li><li><p>Hemophilia Society, BangaloreHemophilia 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 membersRepresents Bangalore in HFI.Secretary: Ranjana Ramchander.Contact details: http://www.hfindia.org/node/32#karnataka. </p></li><li><p>Organization StructurePresident (Elected, Voluntary)Vice President (Elected, Voluntary)Treasurer (Elected, Voluntary)Secretary (Elected, Voluntary)Committee (Elected, Voluntary)Medical Advisors (Voluntary)Physiotherapist (Paid)Administrative Manager (Paid)</p></li><li><p>Hemophilia Society ActivitiesMedicalOpen clinic every ~6 weeks PhysiotherapyCounseling Financial ScholarshipsMicro creditOthersPicnicAdvocacySpreading Awareness</p></li><li><p>Activities (1)</p></li><li><p>Activities (2)</p></li><li><p>Activities (3)</p></li><li><p>Activities (4)</p></li><li><p>Activities (5)</p></li><li><p>Finances (Income)Financial Year April March. Some of the major sources of income. Donations.Individual contributions (biggest chunk)Danida Dennis Rehabilitation FundInterest from depositsAround Rs. 14Lacs (Rs. 1.4 million) in bank balances. Total: Rs. 815,890.00</p></li><li><p>Finances (Expenditure)Some of the major expenses. SalariesOpen clinic, Hemophilia Day, Regional Camp, etc.Big chunk on misc. expenses. Total: Rs.386,558.00Excess: Rs. 429,332.00</p></li><li><p>Physiotherapist1 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. </p></li><li><p>Requested Financial SupportShould we fund the physiotherapists 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?</p></li><li><p>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. </p></li><li><p>Requested Financial SupportDo we approve the requested financial needs of the listed children? </p></li><li><p>Questions</p></li><li><p>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. </p></li><li><p>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. </p></li><li><p>Previously(Circa 2000)People Chain Family in Shivaganga &gt; (Friend) Siddamma (Coordinator Bharti Trust) -&gt; Shanmuga (ASHA, Seattle) -&gt; Jayashree (Bangalore) Prakash (Shivaganga updates).</p></li><li><p>Previously(Circa 2001)Update by Jayashree and Janardhan. SummaryFollow up to previous years work. One of the kids needs surgery to straighten his leg. Action plan and funding info for that. </p></li><li><p>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. </p></li><li><p>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. </p></li><li><p>Previously (Financial summary)</p><p>YearAmount ($s)Purpose20012,000.0020025,250.0020035,300.0020053,150.0015,700.00</p></li><li><p>QuestionsHow 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?</p><p>*Sometimes hemophilia can be non-hereditary. Factors are needed to clot blood during injuries. Hemophiliacs lack the required factor quantity. Type A hemophiliacs lack Factor 8. Type B hemophiliacs lack factor 9.Type A is more common (about 75% of the cases).Hemophiliacs dont bleed more or faster. The bleed longer. </p><p>*When joints bleed, a digestive enzyme (produced by joint membrane) eats away trapped blood. But, it also eats away cartilage covering the bones-ends. This exposes the bone. Exposed bone in turn hurts the membrane, which in turn creates the enzyme, which in turn eats away more cartilage. This creates a vicious circle which eventually causes disability. </p><p>*Ranjana Ramchanders husband, Dr.Ramchander, was a Hemophiliac. He was the coordinator of the Bangalore chapter until he died of heart attack. Ranjana has taken up his work. *****will the physiotherapist be in house for haemophilia society (HS)? if yes, how many people would he working with? also, how much time does he spend with each child? does he provide regular service or only when kids are hurt and need help? also, what happens if we cannot fund the person - is the society pursuing other sources?Would this be onetime?</p><p>*will the physiotherapist be in house for haemophilia society (HS)? if yes, how many people would he working with? also, how much time does he spend with each child? does he provide regular service or only when kids are hurt and need help? also, what happens if we cannot fund the person - is the society pursuing other sources?Would this be onetime?</p><p>*since it's SAC, money would go to society and then to kids or is HS going to disburse it against a child?Increase salary to Rs. 15000 P.M.since we don't see many SACs it would be great to just start with what the program is for and how it's supposed to play out.</p><p>*since it's SAC, money would go to society and then to kids or is HS going to disburse it against a child?Increase salary to Rs. 15000 P.M.since we don't see many SACs it would be great to just start with what the program is for and how it's supposed to play out.</p></li></ul>