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| In This Issue |
May 2009 |
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SWAN USA, a volunteer
organization
The Children's Rare Disease Network |
SWAN USA, a volunteer organization Did you know that we are an all volunteer organization? You might be wondering what that means. Well for us that means at this time we don't have any paid staff, everything is done voluntarily. As we grow there will be a need to hire staff, however our governing board will always be volunteer based. I'm bringing this up for a few reasons. I want everyone to understand how SWAN USA is run and to let you know that all donations go directly to the things we offer; phone support, website, and other things we plan to work on. Since we are an all volunteer organization we can also benefit from the help of others. If you have any thing to offer we would appreciate the help. As SWAN USA continues to grow, we will be looking for board members and committee members. If you may be interested in giving input and helping further SWAN USA's mission please do call or e-mail us. You may also know of a family member, friend or medical provider that may be interested, please do pass along our information. Another thing you should know about SWAN USA; we are working on strategic planning. This will help us get some good focus on some projects that we see may be beneficial to families. Stay tuned, you will see more information to come. SWAN USA has been thinking more and more about the possibility of having local support groups in different area's. We have had some people ask if we have local support groups. We have started a pilot support group in Austin Texas and hope to reach other areas. We are doing a survey to see just how much interest there is with wanting local support groups. We are planning on partnering with The Children's Rare Disease Network, to bring local support groups to different area's. So these support groups will included families who have children with undiagnosed and rare conditions. Local support groups, could help people with finding local resources and connect with others going through similar situations in a face to face fashion. There are many benefits to local support groups, however in some area's there are already support groups that we could easily fit into. What would be missing in these already existing support groups, is the understanding of living in the unknown when it comes to our children's condition. We can certainly come together with certain existing support groups, so there may be greater chance of multiple people attending who would have this unknown understanding. In the survey I will ask what area you are in and what children's hospital you visit. This will help us know if there are certain area's that have a greater need for such groups. I will also ask if there are support groups that you currently attend, we can then potentially connect with those groups and create a larger presence of undiagnosed and rare diseases.
So please take the
survey so we can gather more information to help create support
groups. The Children's Rare Disease Network Syndromes Without A Name USA and The Children's Rare Disease Network are planning on working together on some projects that will benefit the families that we support. I will share more about these project when we have more details. In the mean time you can learn more about The Children's Rare Disease Network. You may also want to register with them as they are building a social networking site that you might be interested in. They are also working on resources state by state and looking for individuals who may be willing to help add to the state by state resources. A 16 year old girl goes undiagnosed for 3 years. She endured severe pain, nerve damage and paralysis. She was diagnosed with a disease that can often go undiagnosed longer than 3 year. read more A rare genetic disease takes the life of a baby Brady. The disease could have been detected in the newborn screening however states vary in what diseases are screened in the testing. The disease that he had was not included in the newborn screening. read more Social Networking is done in many ways and different people like different methods. We have a few methods that we use to encourage networking between families. E-Support Group is our e-mail group through yahoo groups. It is a private group that one needs approval to join. This helps keep out spammers and others who don't have supporting others in mind. We have just over 300 members in this group. This method allows you different ways to access messages; No Mail (view online only), Special Notice (receive only notices), Digest (receive multiple messages in one), and Individual (receive e-mails as they come in). This method may not be the ideal method of networking for all, so we have incorporated a few others. Facebook is a social networking site used by many people. You can add people as your friends and stay connected with what they are doing. We have created a page for SWAN USA, where we all can open up discussions and leave notes for everyone to see.
Myspace
is also used by many people. It is a bit different than Facebook,
though similar with adding people as friend and keeping updated on
your friends. You are able to express more creativity with how you
want your page to look. Though there seems to be no way to
have a group of people sharing in discussion. A Families Experience at the Undiagnosed Diseases Program Our recent journey to understand what is going on with Lorna, brought us to the Undiagnosed Disease Program. You can read our day by day experience through my blog posts about the Undiagnosed Disease Program. Remember blogs start from the most recent post, so if you want to start at the beginning you will need to scroll down to the bottom. Families
often share what is happening with their child through blogs,
carepages, caringbridge or other similar sites. If you have a
certain experience that you would like to share in this newsletter,
do let us know. This E-Newsletter is new, I have not added anyone to the list to receive this newsletter. I will leave it up to everyone to decide whether they want to receive this information. You may be receiving this first Newsletter through different avenues, so don't forget to sign up, we don't want you to miss anything. |
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