Active journals
- By Walter · New reply 10:27 am
- 35 replies
- Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...
- By Brian · New reply November 28, 2008
- 134 replies
- When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...
- By BKuz · Posted November 25, 2008
- 0 replies
- I hope you can join us today, Weds Nov. 26, up in the Bistro area at 7pm as we come together to try writing new types of poems about the things we are most thankful for. There will also be fun thanksgiving ...
- By bonn250 · New reply November 24, 2008
- 4 replies
- my 7 year old daughter has had fevers every4-6 weeks since she was 4.5 years old she also has swollen lymph nodes,mouth ulcers,rashes,& joint pain. This last 7-10 days. The Drs. think it might be hibernian ...
- By rybrans07 · New reply November 24, 2008
- 5 replies
- Hi my name is Kim and my daughter Sarah has FMF. I read on someone else's journal that there are Conventions for families dealing with Periodic Fever Syndromes to get together for the weekend. This journal ...
- By Jordensmom · Posted November 24, 2008
- 0 replies
- Wow, the last few months have been so unbeleivable. In June Doctor Goldbach-Mansky increased Jordens dose of colchicine by .3 mg/day, and the difference is incredible. Jordens last HIGH fever was at the ...
- By Brian · New reply November 23, 2008
- 24 replies
- I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...
- By CanadaNuse · Posted November 17, 2008
- 0 replies
- A lot has been happening on the home front. Ash's medical team including mental health are changing her dosage of medications, times given etc. In hopes that the current combination of medications will ...
- By CanadaNuse · New reply November 17, 2008
- 2 replies
- There has been alot going on, since our last post, and honestly I don't know where to start. We had over TEN doctor visits and still not closer to anything. But we keep on getting more clinical DX for ...
- By BKuz · Posted November 17, 2008
- 0 replies
- Don't miss this wonderful opportunity to enjoy hands on activities and cool demonstrations with Scientist Mr. Freiland this Thursday, Nov. 20th at 7:00pm in The Art Room! You've never been to a Science ...
- By ltodaro · New reply November 14, 2008
- 2 replies
- Hi everyone. I hope other people start sending messages, this is such a great opportunity for us to "meet"!!!! Sometimes it's so frustrating to feel like you are all alone and no one can/will understand ...
- By rybrans07 · Posted November 14, 2008
- 0 replies
- My daughter Sarah is a patient at NIH as well as Children's Hospital of Philadelphia. After 2 long years of sickness she was finally diagnosed with FMF in April 2006 by the Doctors at CHOP (Children's ...
- By Jordensmom · New reply November 13, 2008
- 2 replies
- Well what a painful journey. But I guess with pain and frustration comes wisdom and discovery. Jorden has been taking Colchicine for 8 months. the first 6 months we did not see much of a change, but there ...
- By BKuz · Posted November 10, 2008
- 0 replies
- Join us this Friday Nov. 14th at 3:30 pm on an exciting field trip to The Maryland Science Center in Baltimore's beautiful Inner Harbor Space is limited so please sign up at the welcome desk ASAP! Looking ...
- By BKuz · Posted October 28, 2008
- 0 replies
- November is going to be a month in Educate INN you don't want to miss! Please check out the fun schedule below and email me at kuzmab@mail.nih.gov if you would like a tutor to give one of your children ...
- By BKuz · Posted October 14, 2008
- 0 replies
- This is a wonderful story about the authors who will be at The Inn Monday to speak about "It's Good to Know a Miracle: Dani's Story." Parents Pen a 'Survival Guide' to Leukemia http://www.washingtonpost.com ...
- By BKuz · Posted October 14, 2008
- 0 replies
- Please join us for a Meet th Monday October 20th at 5:00pm Meet the Authors of the book “It’s Good to Know a Miracle: Dani’s Story”. This story is a journal of one family’s struggle with leukemia, written ...
- By BKuz · Posted October 6, 2008
- 0 replies
- Learn INN: Tuesday study halls with snacks! during parent reception by the bistro 4:30- 5:30 pm **on Tuesday Oct 14th and 28th Learn INN will be from 5:30- 6:30 pm** Explore INN: Oct 16th and 18th 7:00 ...
- By KathyG · New reply September 13, 2008
- 6 replies
- Today we went to see his specialist. We found out today that he IS NOT going to send him to Duke University afterall. He is going to talk to a CF Pulmonary Doctor and try to get the DNA screening for ...
- By BKuz · Posted September 9, 2008
- 0 replies
- Educate Inn is very excited to be kicking off the new school year!!! Over the past few months the classroom activities (Explore Inn), field trips (Adventure Inn), tutoring, and homework helper/ study ...
