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Calendar of Events |
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March 2010 |
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We are Odapus but very Happy and will Survive! |
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Written by Dian Syarief
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Wednesday, 24 February 2010 |
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What a beautiful friendship! On saturday, 20th February 2010, around 40 lupus friends from 3 different cities in Indonesia accompanied by their closes persons gathered in the SDF's basecamp to share their experience living with lupus. It was heavy rainy day, but it didn't stop the lupus friends, including Fifi Carmelia with her wheelchair to enjoy the gathering. Watching the CD titled "WE ARE ODAPUS, BUT VERY HAPPY AND WE WILL SURVIVE" also included in the program. Maria Stefianie Titik, the creator, compiled the pictures of lupus friends and their activities including SDF activities which present with "Care for Lupus" song as a background. Participants sang Care for Lupus song with holding hands.
Time went by ang two hours was not enough to share many stories. But, all agreed although suffering from lupus, but it doesn't means that lupus friends could not happy.
Raihan looked very comfy on mama Ira laps, Teguh on Mamas' Maria, Syahrial hugged by Susan, all were treated by Dilli delicious meals. You are all special, you are choosen.
Let us hope that we will always be able to pass the examine given by God.  Testimonial:
* " ... thank you for a warm and loving welcome. I learned a lot from other lupus friends experiences ... " Linda Susanty
* " ... what a wonderful & great moment! Dilli was very happy to meet, share , hugged and shake hands with Dian. Hope to see you next time ... " Dilliyana Santoso
* " ... Thanks for the really warm welcome to given our family especially for our loving Fifi. We are pleased and really touched by all. Allah SWT always be with us ... " Marti Sidik, Fifi's mother.
* " ... thanks Dian for the sharing ... " Evi Berlianty
* " ... Hopefully our togetherness will bring something beautiful ... " Maria Stefianie Titik.
* " ... I got lots of knowledge ... " Ayu Widanti
* " ... Thanks for the warm welcome, keep inspiring... " Nurhayati |
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Living Well with Lupus at Davao |
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Written by Ms. Robelle Tanangunan and Dr. Esther Maderazo
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Tuesday, 23 February 2010 |
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LIVING WELL WITH LUPUS
Davao Doctors Hospital
30 January 2010
With the overwhelming success of the LIVING WELL WITH LUPUS – Patient Workshop in Iloilo, the said activity was duplicated in Davao City last 30 January 2010. It was made possible thru the LUpus InSpired Advocacy (LUISA) Project of Rheumatology Educational Trust Foundation, Inc (RETFI) spearheaded by Dr. Sandra V. Navarra in cooperation with the Lupus Foundation of Southern Mindanao lead by the Davao-based Rheumatologists namely, Dr. Edgar Ramiterre, Dr. Llewellyn T. Hao, and Dr. Tommy Bangayan. Forty eight lupus patients and 29 caregivers were in attendance and was supervised and facilitated by Dr. Marthony Basco, Rheumatology fellows and RETFI staff.
  Dra. Sandra Navarra, giving a short talk about FACTS (FAQs) on LUPUS
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Last Updated ( Tuesday, 23 February 2010 )
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Care for Lupus, Your Caring Saves Lives |
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Written by LUISA Project Administrator
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Tuesday, 16 February 2010 |
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We would like to congratulate Syamsi Dhuha Foundation (SDF) on their successful activity in Clinical Rheumatology last 5 - 6 February 2010 in Aston Hotel, Bandung - Indonesia. 
The program included : lupus information desk's, new member registration and seminar titled 'Myth & Facts About Lupus' by dr. Sumartini Dewi SpPD (Rheumatologist) and 'Lupus Makes My Life More Meaningfull' by Dian Syarief (lupus patient). |
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Last Updated ( Tuesday, 23 February 2010 )
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Living Well with Lupus Regional Workshop |
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Written by Helmar Fantillanan and Robelle Tanangunan
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Saturday, 13 February 2010 |
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LIVING WELL WITH LUPUS
Regional Workshop
16 January 2009
Iloilo Medical Society Bldg.
The first focus-group workshop on lupus patients and caregivers, held last November 2009 at University of Santo Tomas Hospital, Manila was a big success. The activity was brilliantly planned and facilitated by the core group headed by Dr. Sandra Navarra (renowned rheumatologist and head of LUISA project), Dr. Marthony Basco (paediatrician and facilitator in group dynamics and training program sessions), Dr. Lyndon John Llamado, and Robelle Tanangunan (lupus patient and research assistant).
Keeping the advocacy of enlightening lupus patients and their caregivers as well as to improve their quality of life, LUpus InSpired Advocacy (LUISA) project, in coordination with the Lupus Group of Panay, had started to spread the patient enlightenment program outside Manila. The first regional workshop was held last 16 January 2010 at Iloilo Medical Society, La Paz, Iloilo City. Despite a stormy weather, 35 patients and 8 caregivers registered and actively participated, shared their thoughts and insights in the workshop. Spearheading the activity, Dr. Sandra V. Navarra encouragingly introduced the primary goals of spreading awareness and improving long term management on lupus. Four rheumatologists, namely Dr. Roger Dulos, Dr. Carol Arroyo (President of the Philippine Rheumatology Association [PRA]), Dr. Ma. Nida Ferrer, and Dr. Ma. Jovie Gerona unselfishly shared their time to facilitate the workshop. |
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Last Updated ( Tuesday, 23 February 2010 )
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Read more...
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Fighting Lupus One Book At A Time |
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Written by LUISA Project Administrator
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Wednesday, 27 January 2010 |
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New book for charity tackling the obstacle of disease and disability in the family dynamic  Over 8 million families in the United States alone have one or both parents disabled. The stress of illness can be difficult for anyone to bear but for the children of disabled parents it can be overwhelming. A child’s tendency is perhaps to act out in defiance and to be angry with the parent because they lack understanding. A new book has been released in an effort to open the lines of communication for these parents and their children.
As a Registered Nurse, mother and Systemic Lupus sufferer, Meg Walsh, author of Mama, Won’t You Play With Me? Knows both personally and professionally of the effects that long term illness can have on a family. In her own family, both her sister and brother-in-law are battling cancer, each with young children. Out of the 5 children born to Walsh and her 2 sisters, all 5 have a disabled parent. These numbers speak for themselves. Walsh’s book is the story of Dudley Duckling whose mother has a broken wing and cannot play with him. It is a heartwarming story of love and family for any child and may bring comfort to the child of a disabled or ill parent. For each book sold, Walsh will donate a portion of the proceeds to a local charity organization. Every few months a different charity will be chosen to receive these donations. She welcomes readers to contact her through her website, www.MegWalshOnline.com to share their story and nominate a charity to receive the donations. Mama, Won’t You Play With Me?
ISBN 9781449014247
Softcover, 28 pgs
Buy the book at Amazon.com (click here for details)
Buy the book at Barnes & Noble.com (click here for details)
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Last Updated ( Wednesday, 27 January 2010 )
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