Month: October 2008

What we did this weekend.
1. Ballet class and grocery shopping – Vince and Doris
2. Homestead Farms (apple picking) – Edda, Jeremy, and Yvonne
3. Post office and Target – Vince and Doris
4. Ballet class – Doris and Edda (which involved crying from both parties involved – long story, perhaps worthy of its own post)
5. Curried chicken salad – assembled by Jeremy
6. Church potluck – Vince, Edda, Doris and Jeremy
7. Swim lesson – Vince and Doris
8. Hippotherapy – Edda and Jeremy (and Shamrock the horse)
9. Church – Vince (attended class) and Doris (helper in the 4th-5th grade class)
10. Canvassing in Loudon County, VA for the Obama campaign – Jeremy
11. Sunday night Dinner – Jeremy, Doris, Vince, Edda, Ruby and the DC Martins.
12. Grocery shopping again – Doris

Finally, we ordered Kiki and Kappa’s housewarming gift for us – a special needs trailer for our bicycles (one of which is stolen so we can’t use the trailer with that one)/stroller . It’s called a Wike and we are very happy with it, it seems well built and the customer service seems very sweet. After we ordered it on the internet, they actually called us and talked about Edda to see if it would be good fit for her. We’ve been looking for something to replace our jogging stroller, which we used a lot to go into the woods, Edda is way too big for that now… We used it for the first time today to go apple picking (as a stroller) and to church for Saturday night potluck.

Look – it can also be a Doris stroller!

Karen, it works and thanks.

Rena is good at knots. I guess from her Dad who was a sailor. She was also very interested in operating on her only patient (me). She was tightened up the knot on one of the skin tags every night for the past several nights. It shrank a lot. Last night, she cut it with scissors. Before cutting, she, with a big weird smile on her face, assured me that it won’t hurt. Right, I was her only patient. And of course, it was on my skin not hers.

She claimed that she had saved me $400/3=$133.33 also and, a few seconds later, started tackling the rest …

Since my bike was stolen, I’ve been taking the bus back and forth to the metro. Sometimes on my way home from the bus stop, the timing works out that Jeremy meets me and gets off his bike so we can have a few minutes of chatting before we head home for dinner.

Our per diem income of not-taxable status is coming to the end in early November. Therefore, we may be sent to Denver, CO to help out on other projects for a month+ or two. This way, we can get to our per diem not-taxable status back for another year in Princeton.

It may or may not happen. But it doesn’t matter, we like Denver a lot as well as here in Princeton. But just too bad, when it happens, it will happen during the Winter time. I am pretty sure that we can’t carry our old bones downhill on the slope. Or, otherwise, it would be perfect. But, Donald & Doris can. Welcome!

I am going to dig up my previous credit card payments in order to locate that steak house we enjoyed a lot while in CO ~ three years ago. It is in a small, tiny-tiny town. But its steak is the best. Better than those steaks in the upscale restaurants we have visited. But, I need to check the weather first. Snowy roads, up-and-down, in CO is very slippery for my two-wheel-drive car, especially for the rear ones.

Btw, Mom has a perfect heart according to a much more sophisticated test last Wednesday. I are pretty happy about that.

There are a number of charities related to Rett Syndrome, they are populating my sidebar. It’s a little confusing the relationships between all of them. When you make your donation to help out little (and big) girls like Edda, it would be nice to know which organization you are giving to and how their philosophy may differ. There are many, many hardworking people at all these organizations and I can not begin to tell you how much time and energy goes into everything that they do. Without these organizations, I would be lost.

A little history:

About 30 years ago, a woman named Kathy Hunter, started an organization called the International Rett Syndrome Association (IRSA). Her daughter, Stacie, was the 6th person diagnosed with Rett Syndrome in the United States and starting from her kitchen table, she knit together an organization that was very family oriented. Parents of daughters who are now in their 20s speak fondly of that time – remember, no internet, no instant messaging, no cell phones. It was really to Kathy Hunter’s credit that she got all these far flung people together to form a community. IRSA started the yearly family conference, which I have attended twice now. I’ve found them to be uplifting and inspirational.

Then about ten years ago, a group of parents were disappointed with the lack of research that was being done to understand and cure Rett Syndrome, and a second organization formed, the Rett Syndrome Research Foundation (RSRF). This organization, co-founded by Monica Coenraads a year after her daughter, Chelsea was diagnosed. This organization raised over $11 million dollars over the past 10 years and led to the amazing mouse model reversal of Rett Syndrome. Their focus was to to fund research and do targeted experiments to find a cure for Rett Syndrome. It was under the auspices of RSRF that last year, I participated in the Fairfax, VA stroll-a-thon which raised $100,000 for research.

This past year, IRSA and RSRF merged to form the new International Rett Syndrome Foundation (IRSF) and this umbrella organization is taking the family care aspect and the research aspect into one centralized organization. Lots of people from both IRSA and RSRF remained on the board of directors of the combined organization. It is under this organization that I have visited the offices of Van Hollen and Kennedy to ask for money to fund research for Rett Sydrome.

However, during the merger, both Kathy Hunter and Monica Coneraads left the new organization. These two women are both energetic and passionate women, I knew that they would not be quiet for long.

Kathy Hunter has started RettHelp.org, a family support forum where you can “find the facts you need, and the care and comfort you so richly deserve in meeting the challenges of Rett syndrome”.

Monica Coneraads has started the Rett Syndrome Research Trust (RSRT) this past year, and their website just went live! This organization’s focus is to deliver clinical trials of a novel treatment strategy in 5 years. Two women, Ingrid Harding and Kelly Butler (who are my own personal daily source of inspiration) are working hard at Girl Power 2 Cure, which raises funds on behalf of RSRT.

Whew! Are you still with me? It is my biggest fantasy that Rett Syndrome be cured. Not a day goes by without me thinking about Edda being able to control her body and be able to speak! What a day that would be.

Well, just in case all you non-football types are wondering how the family NFL pick’em pool is going here it is. I must say it was pretty bitter for me to come in second 3 weeks in a row. Last week was a bad week for me too. Erg. We’ll try better this week. I think I have a good set of picks. 🙂

In other fantasy news, I’m in 3 other fantasy leagues at the moment. In order of personal priority: 1 paid, 1 grudge match with a couple friends, and 1 non-paid.

I’m totally winning the grudge match. Yea! I’m sorta mid-pack in my paid league, and i’m dead last in the non-paid. 0-4. it’s so bitter, I’m scoring a lot of points, but they’ve all been pretty close loses. I’m the only one totally defeated in that league. It blows. I better win this week damnit.

George Bush is one of the best students of Deng Xiaoping. Why? Because we are practicing not capitalism but “Capitalism with American Characteristics” now, vs. that China is now practicing not socialism but “Socialism with Chinese Characteristics”.

They are now the number one capitalist country in the world and we are becoming the number on socialist country in the whole universe. We (to make us feel good), the government, own everything, on this continent. They have the most corrupt officials and we have the most greedy CEOs & representatives to match theirs, one by one.

Yet, 83% of their people think their country is in the right direction while we have only 23% think so. Not funny at all.

October is Rett Syndrome Awareness Month – and we are very aware of Rett Syndrome, that is for sure.

Consider donating to the Rett Syndrome Research Trust. RSRT is funding a project in which all FDA approved drugs are screened for efficacy in treating Rett Syndrome, for $168 dollars, you can sponsor the screening of one drug. Sponsor a Drug today! We only need 3000 donations of $168 dollars to screen all 3000 compounds.

Onward!

I’m sorry I have been quiet. It’s been busy in many ways, both good and bad. I have been diligently trying to shake a gloomy mood I’ve been in for the past month. From my past experience, I fall into a real depression about once every 5 years, and it’s not been 5 years since the last one, so I’m a little more stubborn about not letting this bad mood go out of control. It takes some effort, going out and seeing people and laughing is usually the best remedy, but it is hard work – getting out of the house.

Today is the end of the fiscal year at work – and I think perhaps for the whole federal government. I just passed my one year mark at work and I’m still loving it and learning more everyday (both legally and scientifically). It’s a fun time! I love learning about flame retardants! I mostly work with polymer compositions with flame retardants. Bisphenol-A? Phosphate flame retardants? Everything you have ever heard of to cause cancer that comes mixed in plastic? Yeah, I read those patents.

I, like everyone else in America, am crazy with the election/banking meltdown/financial crisis and the SNL sketches. Jeremy comes home everyday with new tales of what they are doing on the Hill. I’m on assignment from IRSF to talk with Congressmen about the funding earmark, but I haven’t made any phone calls and I don’t think I will for a little while because they are all crazy busy with shoring up the global economy which I must admit just might take priority to funding basic genetic research at this particular moment in time.

AND SOMEONE TODAY STOLE MY BIKE FROM THE METRO STOP! No not the BMX bike, I bought a cheap bike from a neighbor and I didn’t much care for it at first because it was a little too big and it had 10,000 shock absorbers, but now that it has been removed from my life, I’ve decided it was my favorite bike ever. Now I’m stuck taking the bus to work. Sigh.