Advisory Board Blog
Welcome to our Advisory Board Blog. Here is where we will keep you informed about updates, news, and other exciting events going on at The Chronically Awesome Foundation.
Our Advisory Board is working hard to bring you the programs that will guide you on your path to being Chronically Awesome. The Chronically Awesome Foundation strives to provide information. We aim to keep the public informed about chronic conditions so that we may increase awareness and reduce stigma.
Our Executive Director, Jules Shapiro, will be writing to you each month to keeping you always updated on what is happening at The Foundation. When we implement new programs or progress is made on existing programs, you will find out here.
Don’t forget to read our patient blogs. These stories tell us about how our members have swapped their lifestyle of illness for something more awesome. Something Chronically Awesome. You may even find a blog you want to share with a friend or loved one.
You can find these stories on our Member Blog page.
Where does the time go?
We have been beautifully busy at Chronically Awesome. Between posting your blogs, working on our Quote Quilt project and beginning our photo gallery it is hard to begin. I suppose I will begin with the biggest and the best!
This year our participation in the 10th Annual Rare Disease Day was, by far, our best. With amazing stories of patients who live truly Chronically Awesome lives, facts about rare diseases, and even some puzzles for you to try. Chronically Awesome is a proud NORD partner on Rare Disease Day. Read More…
Learn more about Emi from her Rare Disease Day, Chronically Awesome Story.
It would be hard to wrap-up all of 2016 in a single post. The year was interesting. If we set all else aside and just focus on things that are Chronically Awesome it makes this easier, but not as easy as you might think. 2016 was a big year around here. A year of hard work.
Gratitude, Winter, Shiney, and New
Posted December 2, 2016, by Jules
This Board Blog is going to be a bit more personal than blogs past. I am feeling nostalgic.
It is a funny thing to sit in Californa and welcome winter. It is December 2nd, and we have an expected high of 65℉. That is chilly for us. We are in a Santa Ana condition which means the winds are howling.
Nostalgia and Winter
When I was a kid, I lived about 100 miles north of here. 100 miles makes a pretty big difference when it comes to weather. I did live the same distance from the ocean as the crow flies, about four miles, as I currently live. Where I live now has hills and canyons between me and the water. Where I grew up had avocado groves, strawberry fields, and the town in which I lived sitting flat upon the land before the ocean.
Posted October 4, 2016, by Jules
What an amazing, Chronically Awesome, Summer! Summer can be our opportunity to get out of the house, stretch out our sore joints and get some much-needed sunshine. For some of us, Summer is that time to vacation. What is a vacation? For each of us, a vacation can mean something different.Vacation is from Latin vacatio(n-), from vacare be unoccupied. A break from routine is probably the one thing that vacation has in common for all of us.
How do you break from routine?
Do you take time from work to stay home and get the rest you need? To get things done at home that you have been avoiding or had not time or energy to do? Maybe you get to take a vacation or a few vacations!?
I know that I was able to do a lot of all of the above. Not only was I able to go to Hawaii with my husband and to take a road-trip with my sister to attend the Monterey Jazz Festival with my parents, but summer holds my annual week at the Disney Grand Californian with my mother. All of this while doing some very exciting things for The Chronically Awesome Foundation. Read More
Posted June 25, 2006, by Jules
Summer Is Here! Hello, Sun and Hello, Chronically Awesome everywhere!
As we arrive at the mid-point of the year, June, and finally begin to warm our aching bones, I am happy to be able to show you new content on our site.
While things of the personal tend to step between me and the work of this foundation that I love so much, I am still happy with our “News You Can Use”, and getting more conditions up in the condition center. Because I am very busy, I am always looking for help by way of bloggers, article writers, and condition diary keepers. You can reach me at firstname.lastname@example.org.
Posted May 24, 2006, by Jules
Hello, Chronically Awesome Friends.
May is a big month. May is Mental Health Awareness Month. May is always busy at CAF. When the Chronically Awesome come together for mental health support, some of us have depression, anxiety, bipolar disorder or another mental health condition. Then there are those with a chronic physical illness that, due to the nature of chronic conditions, become depressed and anxious, or isolated and alone. To us, there is no difference because pain is
May is Mental Health Awareness Month. May is always busy at CAF. It is a time when the entire Chronically Awesome community comes together for mental health support. Some of us have depression, anxiety, bipolar disorder or another mental health condition. Then there are those with a chronic physical illness that, due to the nature of chronic conditions, become depressed and anxious, or isolated and alone. To us, there is no difference because pain is pain is pain. One in five people has some mental health condition. With so many in our communities, both online and offline, it is always a surprise to me that there is so much stigma toward the mentally ill. That number tells me that we all know someone living with a mental illness. All of us has a family member with a mental illness. When someone stigmatizes someone with mental illness, they are stigmatizing someone they love……
Posted April 21, 2016 by Jules
It’s time for an update from Jules and the Chronically Awesome Advisory Board!
It is a busy month to be a part of The Chronically Awesome Foundation. You know the expression “When It Rains It Pours.” That applies to things here at #ChronicallyAwesome. But, I am never too busy to stop and read your mail. Your personal stories of Chronically Awesome Triumph make my heart sing! And, when you need to share your troubles and problems, I am happy that you trust me.
Not only do emails come in, but pen to paper. A lovely and healing tradition that has not died. Our address is at the bottom of every page, and on our Facebook pages. Writing your story down for yourself or someone else is an important part of psychic healing. Read More
Posted March 12, 2016 by Jules
In an article on the STAND blog about The Chronically Awesome Foundation, STAND called us a “Cause We Love.” STAND is a social meeting place to “connect with the people you care about for the causes you love.” The article helped to send the strong message about Chronically Awesome and our members; “we are not our conditions, we are people with conditions.” Get the STAND app and STAND with us! Read More.
Posted Fri. Feb. 12, 2016, by Jules
February is the month of love. In the health community, it is more than flowers and chocolates, it is, literally, hearts. American Heart Month is February of each year. Taking care of your heart is important when you are Chronically Awesome. Our hearts take a beating from many of our chronic conditions.
Posted Thurs. Jan. 21, 2016 by Jules
We are excited to welcome you to our new website. The launch of the site marks a big step in the growth of The Chronically Awesome Foundation. As we grow we are proud of you, our Chronically Awesome friends and members, for continuing to carry the torch that lights the way for many chronically ill individuals that are seeking a positive path in their lives. Read more.