Behcet’s Patient Association was established in May 2005 and provides care and help services for behcet patients, aiming to promote understanding and respect to people with behcet among the public, eliminating discrimination and protecting their equal rights on medical care, education and employment.
“Transparent Paloma” Comes from “Transparent Fish”
Behcet’s Association was founded in 2005 and registered as a private nonprofit organization with the Beijing Civil Administration Bureau on May 19th, 2014 as Beijing Paloma Behset’s Disease Care Center, the first nonprofit organization in China to focus on providing support, consultation, and information services for patients suffering from Behcet’s Disease. Our goal is to create an equal and respected social environment for Behcet’s patients.
Behcet’s Association first contacted and got to know Transparent Fish Fund in 2013 through other organizations that help patients with rare diseases and successfully received seed funding for hosting the first annual Chinese Behcet’s Patients Conference. The seed funding paid for part of the traveling costs for a Behcet’s patient who needed to travel from Beijing to Chongqing and back in order to attend the conference and for the printing costs for flyers, brochures, posters, banners, etc. that were used during the conference. The seed funding helped us host a successful conference. From that point on, Behcet’s Association and “TFish” grew together. At that time, Behcet’s Association was still only a small nonprofit, with all our costs paid for by volunteers’ and patients’ kind donations. We had never worked with any foundations, so the cooperation with TFish was Behcet’s Associations’ first time working with a foundation. Our cooperation with “TFish,” an organization that advocates for financial transparency, made a small nonprofit like ours more standardized. For example, at first, we disclosed our funding and expenditures monthly, without following up on each project that is going on. After working with TFish, we learned to write project updates each month, compile last month’s progress, and reorganize Behcet’s Association’s tasks and work. Compiling these updates is also a great opportunity to find materials we can use for flyers and project summaries. We now not only disclose the expenditures for each monetary donation, but also begin to reorganize and make transparent our work that sank beneath the surface. At the same time, under the guidance of Wang Li from TFish, we began to adjust blog contents from the initial only sharing current events and activities to now telling the stories of our patients, having out patients share their thoughts, posting facts and Behcet’s Disease, and so on. These adjustments prove to be very meaningful for our organization’s development afterwards. While TFish taught us to make our financial records more transparent, they also taught us, as a nonprofit organization, how to publish our work and make ourselves more transparent. Behcet’s Association would like to thank TFish’s staff, especially Wang Li, for all their help. Thank you!
In 2014, Behcet’s Association is very honored to be selected as Transparent Fish Fund’s Best Associate Member. This honor encourages us and urges us on to continue following the idea of “Transparent Philanthropy Transparent Finances,” making the now officially registered Paloma Center more transparent and more aligned with TFish’s ideals, and developing into a standard nonprofit organization.
Also in 2014, Behcet’s Association received our second piece of funding support from Transparent Fish Fund for holding a steadfast belief in transparent philanthropy and continuously putting it into practice. We will definitely cherish this opportunity to work with TFish by using the money where it is most needed and by continuously believing in transparent finances and transparent philanthropy, carrying forward TFish’s ideas.
From 2013 to 2014, in the short period of a year, under the guidance of Transparent Fish Fund, Behcet’s Association became more mature and more transparent. We have also been working with more and more Chinese foundations and nonprofits that focus on rare diseases. We are most thankful for, however, TFish for their support during our initial period as micro-organizations, which not only includes financial support, but also includes helping us form a good idea about nonprofits and what we do. All this support will surely let Behcet’s Association go farther and the Paloma fly higher.
Behcet’s Association would like to express our upmost respect for everyone at Transparent Fish Fund!
The following is a monthly update from Little Red Scarf, an NGO that helps impoverished children with congenital heart disease obtain medical care. 21 children have recently recovered from their operations (most were discharged in November of 2011), and post-op phone calls and visits are now over. Let's look at these children’s conditions now!
The following is a monthly update from Little Red Scarf, an NGO that helps impoverished children with congenital heart disease obtain medical care. 16 children have recently recovered from their operations (most were discharged in October of 2011), and post-op phone visit is now over. Let's look at these children’s conditions now!
Little Red Scarf CARE provides aid programs for children in rural Gansu Province. The following article is about a little boy named Nanzhuang, who is hospitalized for treatment for his congenital heart disease. To learn more about LRS Care, please click here.
When Nanzhuang was in the hospital, his grandma and grandpa spent a lot of time taking care of him. Today, I went to see little Nanzhuang. He was put on a drip, and I realized his arms and hands will feel some pain afterward. Upon catching his grandma gently rubbing his little left arm and his grandpa washing the right hand - two people with graying hair caring for him so much - I teasingly asked him: "Nanzhuang, do you like grandpa or grandma more?"
Nanzhuang turned back to look at them and said, “Neither.” The little child didn't know what the right answer was! Grandma heard this and deliberately said, “If you don’t like us, we will leave, and you will have to stay in the hospital alone.” Nanzhuang noticed that his grandma might really mean it, and immediately said, "I like grandma." His grandpa then cut in, "Then I will go. You don't like me anyways." Nanzhuang got worried and replied: "I like grandpa."
How adorable! The poor boy thought that he had to pick a favorite between his two loving grandparents!
Original article was written by Jie Yun, translated by Shishi Ma, edited by intern Kaitlyn Cheung.
Spine China: Zhuo Hongqian's Story
Spine China is a TFish Fund Friend Member, established in March 2010. The NGO helps provide medical assistance to disabled individuals. The following article is about a girl named Zhuo Hongqian and her condition. To learn more about this NGO, please click here.
Zhuo Hongqian is from Yu Cheng City in Shandong province. Shortly after birth, she was abandoned by her parents and was adopted by another family that lived on subsidies. Zhuo Hongqian has had double hip dislocation as a child, but since her family was unable to afford the medical bills, she has suffered painfully all of her life.
Hongqian was raised by the grandmother in the family, but when she was 20 years old, her grandmother passed away. This meant that this woman, who couldn't walk and was incontinent, now had to take care of herself. Simple chores for ordinary people are very difficult tasks to accomplish for her. She has to climb to places where her wheelchair cannot pass; and her skin, especially on her legs and hips, are ridden with bedsores that have decayed to the bone.
Desperate for treatment, Hongqian went on the road for help. After years of searching, she got help from the society. She received a catheter so that she could urinate properly, and also received 2000 RMB (~$317 USD) from the Happy Giving Association. Although many such good-hearted people have tried to help her, her condition remained critical, and her medical costs continued to rise.
Hefei Happy Childhood Community is an organization that seeks to help children in need. Volunteers spend time with kids in hospitals, as well as help fund different charitable projects that support children. This article is a reflection of a teacher who works with the children in the organization.
I clearly remember that one day with the heavy snow. I was the only person standing in the snow vehicle - cold, but filled with excitement. It was beautiful, not just because of the snow, but because of the flowers that were waiting for me.
I first began volunteering at the provincial children's hospital through the Happy Childhood Reading Program. When I have time, I go to sit with the children to read and play games with them. I feel happy and free when I am with the children. Children are so lovely and innocent, like flowers ready to shine, longing for the world full of unlimited beauty.
Although I enjoy my time with children, I have found that taking care of so many alone can be exhausting. Many of the children are small, unable to walk yet, and require much care. As such, I gathered a lot of enthusiastic volunteers whom I knew had serving hearts. Now, I no longer work alone, but in a group.
Together we have witnessed the growth of many children. I always tell stories about Yao. Yao is a pretty unyielding child: his voice is always one of the loudest, he will never surrender, and he always walks stubbornly to wherever he wants to go. The very first time I saw him, climbing was hard for him. But gradually, he was able to grab onto things to get up and eventually directly stand up. It took time, but his persistence helped him take his first step.
Human Trafficking Issue in China
Please find below a collection of news dealing with the recent trafficking issues in China. The following was gathered from multiple sources relating to this ongoing disaster.
China rescued more than 24,000 abducted children and women last year. Some of these victims were sold for adoption while others were forced into prostitution as far away as Angola.
The Ministry of Public Security said that another 77 children were saved in a bust on a cross-province human trafficking network last week.
According to the Irish Times, the ministry told the annual parliament, the National People’s Congress, that the police rescued a total of 8,660 abducted children and 15,458 women in busts of 3,195 human trafficking gangs during 2011.
Agence France-Presse also notes that the trafficking of boy children is a particularly serious problem in China — and is blamed in part on the strict "one-child" policy. Couples unable to conceive a son, or male heir, can simply just obtain one.
Anhui Farmers' Cooperative is an organization for farmers' rights, and has undertaken several community development projects. To read more about Anhui Farmers' Cooperative, click here.
We recently had a cooperative meeting. We had delayed the 2011 cooperative meeting because we had a lot of work at the end of the year.
Before the meeting started, everyone got together and sang the choral song “Red East,” which created a festive atmosphere. This was soon followed by the host’s artillery sound, announcing the start of the meeting.
Soon after, Yang Yun Biao, who is in charge of the agriculture cooperative society, gave a speech, and then the wine shop people and other members also made a report. At the very end, the principal (actually a retired principal, who now works with the agriculture cooperative society, but everyone still calls him the principal) announced the bonus plan. This year's bonus money is coming with the purchase of agricultural resources.
The following article is about a new lunch program in rural schools administered by Light of Love, an organization dedicated to rural health and education. This article consists of a series of updates on the implementation of a new lunch program at a given school district.
Winter break went by very quickly. On March 1, the school district where Light of Love works had its first school day. Throughout the holiday, the Light of Love team has helped putting a smile on many underprivileged students. This year, there are 55 children whose lunch is provide by Transparent Fish.
When school started, the staff told this good news to the children, whose faces became full of joy and happiness. They no longer had to eat cold food, potatoes, and rice dipped in spicy sauce every day. The school district approved paper work for the lunch program and preparations were set to begin at the start of the semester. Although the teachers were kept very busy, seeing the children’s happiness made each one of them as well as the Light of Love staffers very happy.
Being caught off guard
Yesterday, the funds had not arrived yet, but volunteers and staffers at Light of Love still wanted to get the kids to eat their first "love lunch" of the year. After cooking for the kids, we realized that there were many more students than before. Because of the short notice, the teachers and staffers decided to let the kids eat first. The staff had a lot of fun just seeing how much the kids enjoyed the food. Then, all the teachers ate some noodles. There were also a lot of parents who came out, all of whom were quite happy. The Light of Love community feels grateful for everyone’s help.
Light of Love: Lunch Program Budget
The following is a budget update from Light of Love, an organization dedicated to rural health and education in Western China. For more information, please see here. The article strives to convey the transparent practices of Light of Love, in corporation with the Tfish Fund, by making public its financials.
Per quarter: 13200 yuan (lunch funds) + 120 yuan (dining monthly) + 100 yuan (subsidy for phone call) = 13420 yuan;
In total: 39600 yuan (lunch funds) + 360 yuan (dining monthly) + 300 yuan (subsidy for phone calls) = 40260 yuan.
Each quarter needs three sets of "dining monthly calendar”: 40 yuan/set * 3 sets = 120 yuan; A year requires nine pieces, for a total of 40 * 9 = 360 yuan.
Each quarter, phone subsidy of RMB 100 for who’s responsible for the investigation in secret by phone, a yearly subsidy of RMB 300.
Green Pond Elementary School costs 13200 yuan for funding children in poverty a quarter (3 months). A year (three quarters, the third quarter-July-September’s funding is not calculated because students are on vacation) total student funding is 39600 yuan (for details, see the above "Subsidizing Money Estimation"). Grants can be given once a quarter, grants are done by local volunteer teacher for poor students, and later feedbacks were also done by teacher volunteers and members of Love Light public welfare.
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