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Henry Brehm Executive Director

Henry Brehm Executive Director. NephCure Foundation = Patients first. Our Mission. The NephCure Foundation is the only organization committed exclusively to supporting research s eeking the cause of the kidney disease

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Henry Brehm Executive Director

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  1. Henry BrehmExecutive Director

  2. NephCure Foundation = Patients first

  3. Our Mission The NephCure Foundation is the only organization committed exclusively to supporting research seeking the cause of the kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, developing better treatments and a finding a cure.

  4. Nephrotic SyndromeYour kidney is an essential filtering system Coffee Filter Comparison

  5. Challenges Faced by Patients and Their Families • It’s a confusing diagnosis • MCD versus FSGS • No direct correlation with genetic mutations (some rare early childhood cases of autosomal recessive FSGS) • Docs may only see a few cases a year • Many different manifestations of the disease • No known cause! No cure! • Treatment is non-specific and harsh • Prednisone is the first line drug • Second line drugs are cancer therapies • Only one FDA approved drug for FSGS (ACTHAR) and it is non-specific • None are successful in eradicating the effects of the disease • The disease progresses to ESRD in a large percentageof patients

  6. Meet Lindsey • Lindsey is now10 years old • Diagnosed with Nephrotic Syndrome at age two • Diagnosed with FSGS at age seven • Undergone 22 surgeries, including a kidney transplant • Hospitalized 172 times • Missed 473 days of school including the entire first and third grades • 502 doctor visits • 7,568 doses of medicine • 4,264 hours on dialysis

  7. NephCure Creates CommunityPersonal Outreach & Online • To feel less alone • To have a place to turn for more information than they may receive from their doctor • To know what questions to ask going forward • To develop friendships • To share life coping strategies – diet, exercise • To be counted!

  8. Meet UjuNephCure Patient Advocate • Engages each and every new patient with the Foundation • Personal outreach • New patient webinars each month • Listens to patient stories • Collects patient surveys • Answers questions • Makes connections

  9. NephSpaceSupport Community

  10. Stories on our Website

  11. Thank you Thursdays on Facebook

  12. Wall of Excellence

  13. NephCure Ambassadors • Generate awareness to place media stories • Patients & families who are engaged feelgood about their involvement • Referrals come from patient familiesor through leadership connections

  14. The Value of These Programs • Benefits • Create a community to which patients can turn for answers • Generate leads for advocacy, fundraising and other NephCure initiatives • Increase commitment to our mission and make it easier to engage patients • Costs • Staff time • Infrastructure to create NephSpace • Volunteers provide the content and monitor social media sites

  15. Lessons Learned • Patients need sources of information in addition to their doctors • Minority community engagement is challenging • Patient/families motivate patient/families • Patient stories scare other patients • Patients stories motivate activity • Monitoring is necessary • Patients motivate staff

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