Live Your Best Life With Nephrotic Syndrome! July 22, 2015 by Chelsey Fix Coming this fall to a city near you: our freshened up patient workshop about “Living Your Best Life with Nephrotic Syndrome”! These FREE half-day seminars feature experts in Nephrotic Syndrome that can help you, and your family, live YOUR best life! Added bonus: a free kidney healthy lunch! Click on your city below to reserve your spot before it’s too late! Albuquerque, NM – Oct. 24 REGISTER Ann Arbor, MI – Oct. 24 REGISTER St. Louis, MO – Nov. 14 REGISTER Philadelphia, PA – Nov. 14 REGISTER RECENTLY COMPLETED WORKSHOPS: Charlotte, NC- Sept. 12 Cleveland, OH – Sept. 19 Austin, TX – Oct. 3 Baltimore, MD/ D.C. – Oct. 3
Angelica says July 31, 2015 at 3:26 pm We live in California, Ventura County to be exact. Can you please coordinate one in this area. Thank you.
Chelsey Fix says August 4, 2015 at 2:42 pm Thank you, Angelica! We do hold one of these seminars every year in the winter-time in conjunction with the Los Angeles area walk. Realizing that we are in the dog days of August, we’d be happy to schedule a call with you to direct you to similar resources or connect you with others in your area! Feel free to email us at patientadvocate@nephcure.org.
Erin Russell says August 24, 2015 at 9:20 am No, there is currently no support group near Irvine. But there may be peer to peer opportunities. Let me put you in touch with Kelly Helm, our Manager of Patient Engagement. I will have her contact you. What is the best way for you to be reached?
Tara rye says August 29, 2015 at 12:21 pm Any support group or resources in San Francisco where we live? My teenage son was diagnosed w primary FSGS a year ago. Would like peer to peer too! Thank you.
Chelsey Fix says September 1, 2015 at 9:06 am Hi Tara! While I don’t see any support groups in your area, there is always opportunity to get one started! For information on peer-to-peer support, click here- https://nephcure.org/connect/support/peer-to-peer-connections/ and email Kelly Helm at khelm@nephcure.org with any questions. I hope that is helpful!
Kelly Helm says October 6, 2015 at 12:21 pm Hi Tara, We do have a potential Support Group Leader in San Francisco, but the group is not quite up and running. Would you please take 5 minutes to complete a patient information form via http://www.nephcure.org/patient-information so that I can keep you informed about the groups progress? We also have a “virtual” support program called Patient to Patient Connections. You can learn more here: https://nephcure.org/connect/support/peer-to-peer-connections/ Sincerely, Kelly Helm Manager of Patient Engagement
Elizabeth Montealegre says August 31, 2015 at 3:05 am Hi I live in Yuma Az, is there any of these type of events in any near by city? Phoenix, Los Angeles, san diego, even Vegas could work for me. Thanks
Chelsey Fix says September 1, 2015 at 8:57 am Hi Elizabeth! The closest one we have in that area is in Albuquerque, NM on October 24th. However, we do something similar to this event every winter (around January) in conjunction with the Los Angeles walk. Be sure to check back regularly to see if there are any updates or schedule changes. In the meantime, you could also check out our Peer-to-Peer programs here- https://nephcure.org/connect/support/
Aaron says September 15, 2015 at 8:20 pm Hi we have a 3.5 year old recently diagnosed with fsgs… would a workshop like this be applicable to us as parents? We’d love to attend the Cleveland workshop this wknd but dont want to spend the time to travel there if the topics discussed won’t apply to children…
Abbey Swan says September 16, 2015 at 8:29 am Hi Aaron, The workshop would definitely be applicable for you! You’ll have the opportunity to learn from local experts as well as speak to other patient parents and NKI staff. We would love to have you. You can register online here: https://nephcure.org/events/nephcure-community-education/free-nephcure-community-cafes/