All posts filed under: News

The Purpose Hotel benefitting the Social Good 

Living life with a purpose so much deeper that you make an impact on someone’s life through everything you do – even when staying in a hotel on business or personal travel.  Instead of earning personal points, you give back to those who are less fortunate. Living with the purpose of giving, versus receiving = life-changing and soul-healing.  The Purpose Hotel features top-of-the-line products and materials that contribute to social good. All good hotels provide a retreat – a respite – for its traveler. The Purpose Hotel goes farther: it connects you to something that’s bigger. Simply put, people are the purpose. Everything in the hotel is carefully considered with how it benefits others. By backing The Purpose Hotel, you become part of a larger movement. 1 for 100 Benefit Model The goods and services that make a guest’s stay comfortable and luxurious help improve the quality of life for people around the world. Our design and operations teams strive to source items that maximize the number of people who benefit from the jobs it …

EDS Population Survey – Utah and Surrounding Areas

Ehlers-Danlos syndrome (EDS) is a common comorbid condition to Mast Cell Activation Disorders. For those who have been diagnosed with EDS and live in Utah or surrounding areas, please consider taking this survey. “Make your EDS voices heard! There is a medical institution in Utah that is considering opening an EDS devoted center or clinic. One of our main volunteers and personal close friend, has been asked to help collect data to convince the funding side of this potential project that there is need, that there are enough of us, and that we would show up for diagnosis and/or treatment, if a center exists. If you live in the Western US, or would be willing to travel to Utah for treatment, please take a moment to complete the following survey. Our friend collaborated in designing the survey, and has been assured that the data will be seen by those in a position of influence and decision. This information will be used to help inform what kinds of services are needed. Please feel free to share …

Fight Song Video Project – Send In Your Video Clip!

Fight Song Video Project – Send In Your Video Clip! Max 1 min video clip of you singing, dancing, or both to “Fight Song” by Rachel Patton For anyone suffering from a chronic illness, including those who love and care for someone with a chronic illness, especially those with Ehlers-Danlos syndrome (EDS), Mastocytosis, Mast Cell Activation Syndrome (MCAS), and Dysautonomia/POTS Email to Your submission means that you are giving us permission to use your video for a compilation video project that will be shared publically. 

May is EDS Awareness Month!

 May is EDS Awareness Month! 

In honor of EDS Awareness Month (May), Sarah Wells from My Stripy Life and I are sharing details on what you need to do to register for your FREE copy our parenting EDS Kids e-book ‘51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)‘ once it’s released! What first started out as a joint blog post about parenting and having kids with EDS, turned into a six-month-long project that Sarah and I have been working on off and on, waiting for the right time to finish and release it. As we continued to collaborate on it, we kept finding more and more to add, and even more information and resources that we wanted to make sure were included in our post – which then turned our joint blog post into a full resource e-book. This e-book is the real; no holds barred advice that we wish we knew, and we hadn’t had to figure out for ourselves, the stuff that the medical books don’t always tell …