A little of this and that….

I want to take a moment to do a couple of things. Both of which I have been meaning to do for a long time. I want to explain my vision for the Blooming Rose Foundation and what our goals are for the upcoming future. Also, I want to give some MUCH deserved credit to a number of amazing foundations and individuals who I believe have the power to revolutionize the face of CF. And not with a cure, but with a new perspective of what this disease means for new parents and how to teach our kids how to view their futures and unlimited potential.

Okay, so initially the Blooming Rose Foundation was created to send out packets to families with a new diagnosis in Montana. It quickly became the surrounding states, then the west coast, midwest and east coast. We are now across the nation and Canada and we are even offering support and packets as far out as Sweden, Portugal, UK, Ireland, Australia, Germany, South Africa and the Ukraine. So, my vision has had to adapt and adapt quite quickly. I want to keep my vision of making sure that anyone that has a new diagnosis is not alone. This applies to absolutely ANYONE. We want to be able to support parents in all countries. The information is often very similar or it takes a couple hours of searching and contacting folks to find programs and support systems in the area, but it is not difficult. It also gives me great thanks for our medical care and services her through the Pharma companies. Albeit, I still think Sweden is at the top….I give the US a close second! So, that is our primary service. In addition we want to help by sending baskets to CFers in the hospital. While this is more of a long term goal, I hope to be able to do it from time to time while we wait for sponsorship, ect. We also hope to work on a couple of projects that help to get the word out about CF to those not familiar with it as well as educate those that thrive with CF about the latest social and support networks, assistance programs and lastly we hope to bring a swedish team over  here for a CE conference regarding their practices, how they differ and why their approach is so different from ours as well as their outcomes.

So, that brings me to funding. While we do not have any secured funding at this point, we do have a couple of great fundraisers coming up and hope to find a wonderful, wealthy, good-hearted individual to take on our operational and salary costs. Not that I mind working for free…..

Once we have our operational cost covered our fundraising efforts will go directly to packets, baskets and CE conferences. We also hope to hold a conference at some point for parents and families to learn more about the social, emotional and mental aspects of living and loving in a CF world. All based on the idea of learning to frame your thinking and vision around what you want for your child and what you see for their bright future. This would not be a conference like CFRI or CFF, it would not discuss research at all, the primary purpose would be to have parents in an environment where they can meet, talk and become empowered by positivity.

All other proceeds above our projects will be donated to the CFRI, Inc. CFRI is a wonderful non profit that focuses not only on research, but supporting the families of those thriving with CF. They have given so many wonderful advances in CF research to all our loved ones, but also have an amazing support system for new and veteran families and CFers. We hope to donate a lot to them!!

Moving on……

I want to say that I feel blessed to be a part of this community. CF brought us all together, but I feel like we are now so much more than that and I am so grateful to all of you that I correspond with or who comment on the BRF page. On Monday, there was a virtual meeting between a couple of us non profits that have some similar visions for CF. First of all, I want to say that I still feel in awe that I get to be a part of anything with these folks as they all seem “famous” to me! But, I am so grateful to have their expertise, their support and their friendships. With that in mind, I want to also say that the list of non profits and organizations involved in the CF world that I would hope to someday collaborate with is so incredibly long, but the five of us seem to stay in touch and involved in each other’s projects or hopes for future missions.

(In alphabetical order)

Sarah from Breathe for Tomorrow, who was there in spirit….but we had a good pow-wow the week before!  What an amazing spirit and an incredible mentor for parents and CFers of all ages. I am amazed by all that she has accomplished for families since the launch of her nonprofit.  She has a way of being realistic, positive, hilarious and unbelievably good hearted all in one moment. So, huge thanks for all she does for the CF world.
Ronnie and Amanda (some know her as Mandi) Cystic Life and RunSickBoyRun. Rhondi….what can I say that you all don’t already know. They have an amazing following for a number of reasons, most obviously their unending dedication to the CF community. I am constantly amazed that they actually have time to sleep, eat, or anything else. They pour their heart and soul into these two incredible projects. I am so grateful for Ronnie’s dedication to lifting people up and keeping them up and all the research and honest answers on the life of a 30 year old CFer. Mandi, what a gift she is. The amazing spirit and confidence that I strive for in this life. In addition she is the poster child for the phrase “heart of gold.” I have never known anyone else in the NP world that wants to help with other NPs projects as much as her. She is such a gift to this community and to me. Thank you for pumping me up before soliciting for money!

Emily from Rock CF oh girl, what is there to say. She has an energy and love for this life that is so contagious. Em is one that always supports anyones ideas (no matter how crazy) and then actually ends up convincing us that they are going to be incredible. What an amazing person, the support from her is unending. I am so grateful for her laugh and smile, it has a way of letting people know that life with CF is good, without saying a word. Em, you ROCK!

And last but certainly not least, Josh our fearless leader from Welcome to Joshland. Joshman, is are the most honest (brutally at times) person I think I have ever met. He knows himself and what  he hopes to see in the evolution of this CF community of ours and thinks constantly how he can help make the new generation of CFers a positive one. He gives so much to the new parents and adults, which is amazing but it is the heart that he has that allows him to speak to the littlest ones that are learning what lies ahead in this journey. You give them hope, laughter and smiles when they are doing their treatments or  their visits in the “hole.” So, thank you for your humility and your vision. Your sister is so very proud of what you have done with this life, for that I am certain.

Wishing you peace from Montana~