Disability Pride Parade, a video.

Caught this video on Saturday in Chicago at the Disability Pride Parade, http://www.youtube.com/watch?v=-EBR_CJz6EU.

Just in time for the birthday of the Americans with Disabilities Act.

// Catherine Calhoun

Official Shoe for Rare Disease Day 2011, Denim Keds?

Just sayin’, if we had an official shoe. This would be a good one. Hello Keds? Hello Gap?

// Catherine Calhoun

Blue Jean/Denim Inspired Bracelet, lovely way to raise rare awareness.

I love this blue jean/denim inspired bracelet, it reminds me of the ones from when I was a kid that we’d get at the beach in a natural color, tie on, keep on until it fell off from wear. I’ll be wearing this for rare disease awareness just as soon as it arrives! And then hopefully Ella and I can figure how to make some more like it.

//Catherine Calhoun

Sometimes dogs are the best medicine, for bone pain.

2:32 a.m. That’s the time of night (or super early morning) that Billy wakes up. I hope it’s a bad dream from too much Scooby-Doo. I listen to the monitor for a minute or two to see if he’ll fall back to sleep. I count on my fingers – January, February, March. Not long enough. I was really hoping we’d get to June before he needs more pain medicine for his bones (by IV infusion, about 5 hours).

I plod down the stairs to his room and offer him some water. He quiets. I trip back up the stairs and try to sleep, heart pounding from steps in the dark and worry. He cries out again (repeat above).

He cries out again. This time I just stay in his room pushing the dog into a tighter curl-up at the end of the bed as I perch on the edge of the twin mattress. I can’t really sleep at this point. And think how much I hate bone disease. I hate the surgery scars (make me wince, on the inside, every time I see them). But what I hate the most is the pain.

I won’t know for sure for a few more nights. Fingers crossed it’s just a bad dream.

I wrote this in May but was too superstitious to post it. It was pain, and Billy did more infusions. I was talking with one of my favorite researchers today about the pain. Apparently, Billy has it worse than most. Maybe he feels okay about 80 percent of the time and then miserable with pain 20 percent of the time? That 20 percent haunts me.

One of the reasons we (me) went for getting  a companion dog for Billy was because I read that pets can help with pain, pets make people feel better. Everyone, pretty much, thought I was out of my mind to add another responsibility to my day to day life. Now everyone loves Picasso and has no doubt he is great for Billy, especially when Billy sings songs to Picasso like “you are my buddy, you are my pal” as he gives him sweet pets.

Global Genes Project, denim/blue jean bead bracelet.

FDA Hearing on Rare and Tropical (Neglected) Diseases

Just finished up watching the FDA hearing webcast from earlier this week.

Loving Sen. Sam Brownback.

If you have a rare disease, “God bless ya” because we “got no treatment for you.” The billion dollar per drug model doesn’t work for 7,000 rare diseases. We need a new different model – adjust the system so that it costs less and still provides quality drugs. Time to stop walking by the sick people. We can do better.

and Sen. Mark Pryor.

Not so sure how much I love about 50 minutes into the webcast. Ouch. Diane Dorman of NORD referring to Emil Kakkis of Kakkis EveryLife Foundation‘s specialized review division as — an “additional silo.”

// Catherine Calhoun

Chase Community Giving Summer 2010 on Facebook, rare disease ticket.

Community Building Tools, a technology conference recap.

Before I forget everything I learned in early June at a technology conference, here goes.

Use good content to build your audience (and encourage your members to share/make it easy for them to share) – you have to get out the “why” for your organization. Does your content touch people emotionally? Move people to action? Make them different? You gotta have stories and thoughtful analysis.

Sexy concepts like “efficiency and transparency powered by social media” (e.g. Facebook, twitter, etc.) do not replace the old school tools (phone banks, petitions, door knocking, lobby days and email campaigns). The point of online tools is to better connect people with what they need offline – online is not the end, online tools simply help you better deliver on your mission. Face-to-face.

And it’s not about the size of the list (not not not). It’s about – how effective are your supporters? 2,000 believers are better than 100,000 people (followers/fans/likes) who don’t really care.

What about mobile tools? Will “text” raise millions of dollars for your organization and magically build your group? Probably not.

Consider your audience when you build a mobile campaign – do your members rely more on mobile devices like cell phones with very limited internet access otherwise? Regular cell phones and smart phones are not the same – don’t treat them the same for a campaign. Make it easy to opt out (a simple “stop” to remove from the list).

If mobile suits your group, it can be very important to you for (1) list-building (a face-to-face ask for mobile contact information works best – that offline thing again), (2) communication and (3) reaching super volunteers. People at the conference spoke very highly of Mobile Commons. Mobile works for collecting questions (i.e. What would you ask Pres. Obama?) – but you’ve got to follow-up and show participants what you did with the questions, your follow-thru and report back, very important.

Mobile can be powerful. During a rally in D.C. with about 200,000 attendees – the hosting organization put up a big board for posting text messages from people too far away to attend – a chance to text in public support for the rally. 30,000 texts were sent in, how cool is that? Another neat idea is telephone town halls with zip code locate to help bring people together for small face-to-face house parties/meetups.

Don’t expect to gather much for demographics with a mobile campaign. You could make an offline offer (e.g. sticker) that could be useful for gathering demographic details (i.e. mailing address). (Now I know why I get those offers – and I just thought people were being nice).

When you’re building your group you have to be patient.

Sometimes paid ads are needed – you want to be one of the first three finds for a Google search related to you/your mission which means Google AdWords can be very important (especially to a nonprofit). AdWords gone rogue (see Kit Kat plus Greenpeace).

Listen. And treat people how you would like to be treated. Still, expect trouble makers (i.e. online trolls). Don’t expect to control the message top to bottom – social media tools sometimes mean you will lose control of the message as people engage and pass along. You want a balance between participation and police state.

Honesty. You don’t have to know everything.

Measure everything and keep doing the things that work.

Rule of thumb on everything you post/share/send out – keep it 80 percent not about you – I’m talking links, photos, videos and the like that are interesting and worth sharing, something that makes an emotional connection somehow because it’s sad, funny, silly, informative, etc. – that leaves you 20 percent about you (e.g. staff stories and photos).

Don’t drag campaigns out – people get fatigued with campaigns lasting longer than two weeks. Headlines and deadlines are key – if you can find combined relevance in news and your mission/supporters – use it.

Blogs. Nice checklist.

Now you know everything I know (it seemed like more when it was just in my head). For more on technology tools, see Personal Democracy Forum.

// CC

P.S. I love Google for making it possible for me to attend the conference (and giving me a cool yellow/orange hat which I had to give Billy as his New York City souvenir because I was so busy conferencing that I didn’t do any shopping). Next up . . . BlogHer in NYC this August (shopping mandatory).

Welcome to Scientific Curiosity.

I never expected for my very first question to get picked for an answer (see first question here), and then last Friday I was so excited to see my twitter question featured on the Office of Science and Technology Blog, “Who Do You Credit For Your Scientific Interests?” I feel almost famous and delightfully nerdy (the White House OSTP Blog, White House). This week, I tweeted a question for Billy (this really is the sort of thing he likes to wonder about).

To ask a burning question of Dr. Holdren, send an e-mail to AskDrH@ostp.gov or tweet your short question to @whitehouseostpwith hashtag #AskDrH. Dr. Holdren will select one query each week and answer it via a short blog post to appear every Friday.

Slow with a cup of milk on the side.

When you have a medically fragile child, it seems like every part of your life slows down, almost to a freeze.

I learned quickly with a few pulled back muscles that I have to use my legs to lift my son (about 40 pounds at diagnosis, now about 90 pounds). His gear is big and bulky – a walker with wheels and built-in seat and lightweight wheelchair (less than 30 pounds). A transfer board helps when he has a leg cast or is post-orthopedic surgery (yes, you can love things like transfer boards, really love). We do everything slow, even if it means we are always late.

My son’s weight is a battle. The leaner he is – the better for his fragile bones. But, the catch is that when you have no thyroid (removed, disease related issue) and spend most of your time unable to move much because of pain, injury or surgery, weight management becomes a whole different animal (oh, and when son’s favorite foods are pizza, cheese burgers and Cheetos, extra complicated).

I dread his medical check-ups because I know each and every doctor will frown at me when his weight climbs. It’s like getting an F on top of a pile of F’s. When his bone doctor (who I really love, even more than the transfer board) quips that he looks “um, like he might have gained some weight,” it takes everything I have to not look him in the eye and say “listen up doc, you have no freaking clue what it takes just to keep this kid in one piece, no freaking clue?”

But, I have good news, maybe even great news.

For the first time in over four years (four years) my son weighed in at a loss. He grew taller and did not gain any weight during the past four months.

It has taken lots of friendly nagging. “Is that a good food choice?” “Can you ride the stationary bike for just two more minutes?”

I listened in on a web presentation last week through Mamapedia and the California Milk Advisory Board that confirmed some of my tricks – baking together, slowing down to enjoy our food, eating together, new foods in new ways and the like. So as it turns out, our whole being the slowest family ever, that can be a good thing. I’ll take this win for as long as it lasts – gobbling up some delicious A’s for the first time in a long time.

// CC

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