Unidagnosed syndromes you tube channel

We are a part of a non profit organization called SWAN USA(Syndromes Without a Name, USA). They have a you tube channel and there is a slide show there that explains what they are for and shows the kids. Katy is on there. I know these kids from talking to their moms for years and we have grieved together as we have lost some over the years. That is the most tragic thing when you talk about undiagnosed kids, they face terrible challenges and the doctors don't know how to help. Please consider shopping online through I-give and designating funds for SWAN USA. This organization is on a crusade to help researchers and doctors help these kids by finding out what is wrong. They also try to educate parents and caregivers on where to go for help.

Update from Real Families Real Answers

I got an e-mail from Blair Treu about the documentary that we filmed for last August.
Here is the letter I got.

To all Families and Scholars who participated in the Real Families, Real Answers documentary series;

Thank you so very much! I’m sorry for the impersonal nature of this letter, but I want to get the word out quickly. Here’s an update on the progress of the series.

We completed principal photography on the Series in December of 2007, and we’ve been busy in the edit rooms ever since. You’re effort and patience with us in this process is about to pay off.

Promotional advertisements for the Series are now playing several times a day on both BYUTV and KBYUTV. If you tune in, you may see yourself or members of your family! If you don’t see yourself, don’t worry, the promo is only 5 minutes long and there was no way to represent all families that participated in all 13 episodes. Tune in beginning September 23 at 7:pm, as we begin to air Real Families, Real Answers in its entirety, and keep an eye out for your family (see table below). Please check local listings or www.byutv.org for more accurate updated information as the broadcast dates draw near. (Scholars, I’m sorry you are not listed in the table below, but I believe most of you are aware of the shows in which you were involved, so just check the shows by topic)

RFRA Series Show Order Air Dates Guest Families

1. Strengthening Families Pt. 1 September 23, 2008 Wiginton/Bennett/Cousin

2. Strengthening Families Pt. 2 September 30, 2008 Wiginton/Bennett/Cousin

3. Protecting Family Time October 7, 2008 Chapman/Cahan

4. Managing Our Emotions October 14, 2008 Giddins/Candland

5. Keeping a Marriage Strong Pt. 1 October 21, 2008 Skolaski/Jackson

6. Keeping a Marriage Strong Pt. 2 October 28, 2008 Chase/Frandsen

7. Effective Parenting November 4, 2008 Rowe/Howard

8. Parenting Teens November 11, 2008 Parsons/Brooks-Nichter/Willis

9. Family Finances November 18, 2008 Hughes/Beverly

10. Strengthening Blended Families November 25, 2008 Webb/Hill-Mullford

11. Successful Single Parenting December 2, 2008 Newell/Dico

12. Family Crucibles December 9, 2008 Johnson/Bussey

13. Avoiding/Pornography December 16, 2008 Hughes

Additional Air Dates (General Conference)

Protecting Family Time October 5, 2008 Chapman/Cahan

Managing Our Emotions October 7, 2008 Giddins/Candland

There are additional broadcast dates for KBYUTV, BYUTV-HD, through this same time period. BYUTV International airings will start world wide in January 09. The series will also be available on other PBS affiliated stations across the United States in 2009. DVD sets are anticipated to become available in early 2009. After the series has been delivered for distribution, I will TRY to get a DVD to each of you who have participated in the series as a special thank you.

You can watch byutv online at their webiste here.

Special Needs ministry

William and I have felt for some time that God is calling us to start a special needs ministry in our area. We are gathering information and praying for guidance on where to go with this. We know that families with disabled members usually don't make it and the divorce rate in this group is 80% or more. We also know that 80% of families with an individual affected by disability are unchurched. I really think that if we as churches do something about that then the divorce rate would most certainly improve in this "unreached people group." Missionaries travel the world to reach "unreached people groups" and we have a huge one living in our very own communities. So why are these families unchurched? From my own experience the churches are simply not meeting their most basic needs for accessibility and understanding. In short they are not meeting them where they are and not even trying to find out how they can help. So what does a family affected with disability need in a church? Well that all depends on the nature of the disability and the needs and personality of every member of that family. This is why no one gets anywhere, how do you prepare for the unknown? The answer lies in scripture. Paul said he was all things to all men so that they could know the love of Christ Jesus. And in Matthew Jesus said that in order to enter the kingdom of Heaven we must become like the little children and those who cause these little ones to stumble might as well have a millstone on their neck and be tossed into the ocean. Now that I think of it, that is exactly how I felt when I was not being met where I was at church, I felt like I was drowning in despair. If the very people who are the temple of the living God are not sharing that love with these families where can they go? The world out there is certainly not going to sustain these most blessed families. God's strength is made perfect in weakness and a person with a disability illustrates God's perfect grace in everyday life. Check out this link on how one church is making a difference in this area.

Check this out!

During the conference there was a young man running around getting pictures of all the children. He was so friendly and truly saw the beauty in those kids. At the concluding breakfast he presented the photos he took and told us about himself and the company he founded. He is a fashion photographer who grew weary of being told what was beautiful and disgusted at how fickle the concept of beauty seemed to be in that industry. He had a wild idea to try to change that and decided to take photos of people the fashion world might reject, but he saw their beauty shine through and wanted to share that beauty with the world. Katy is in his slide show on his website here.