In my last rather somber post I mentioned that despite a downturn in Ash's health, there are still many reasons we have to continue to be excited for the future. Many of our big "praises" currently are closely tied to some amazing individuals who have been going above-and-beyond to honor Ashleigh. The ball is rolling on some exciting plans that I want to share with you.
Just about all my posts reference that I'm not a big Facebook guy. Still, if you are someone who makes regular use of that tool I might ask you to consider re-posting, or sharing, or whatever it is the kids are doing these days. There are a few initiatives in the works to honor Ash that are in process, and I want people to be aware of them.
The first is an awesome T-shirt Fundraiser spearheaded by the amazing super-mom Andrea over at the blog Momfessionals. Ever since the passing of the tutu Andrea has been a real friend of our family and has used her status and influence in the blog-world to help us out at every turn. She is a great example of how to use whatever sphere of influence you have (whether that's cancer or just being an "average" mom) to effectively express faith in God. I wanted to get this in front of you today, dear reader, since the deadline appears to be wrapping up soon. Thank you, Andrea!
Along similar lines, there is a whole committee of folks actively working to make Ashleigh's dream of a gala event a reality. The progress these folks are making is truly phenomenal and a fulfillment of Ashleigh's vision. She couldn't plan it better herself - and that's saying something! We have a date: August 13, 7-10 PM at the home of a truly gracious lady in Preston Hollow.
I'll share more details here as they come available, but for now save that date! Several influential friends in the cancer community that Ashleigh has made along the way have been instrumental in helping make this happen, along with two different fantastic event planners and a group of Ashleigh's close personal friends. The folks of Ally's Wish are helping to make this happen, and many many people and organizations are donating to the effort. It's shaping up to be exactly the swanky shindig that Ashleigh dreams it will be (though I think everyone involved would shy away from wanting it called a 'shindig').
Tickets will be $100, and I'll publish the Eventbrite registration page as soon as it's up. This is significantly less than the cost for a 'typical' society-event; Ashleigh wants it to be accessible for our friends to attend as a thank-you for all that they have done for us over the last year.
All of these efforts feed in to one goal that Ashleigh has: she wants to raise $100,000 for research into her specific type of disease. Triple-negative, inflammatory, metastatic: any of those adjectives in isolation are bad news in the cancer world. They are all indicators of aggressive, deadly disease and none of them receive very much attention from funding sources. Ashleigh's post on Pinktober covers some of the issues at play - suffice it to say (in an admittedly sweeping generalization) that the rarer, more aggressive types of cancer are generally under-funded but are actually what kills people.
On top of directly funding primary research, Ashleigh wants her legacy to be funding research for many years to come. So the funds we raise will go into an endowment that will pay out each year to directly fund research projects that would otherwise be overlooked and unfunded. Our hope is that this will allow our cancer charity of choice, the IBC Network Foundation, to have a consistent source of funding they can count on each year, indefinitely.
To this end, the central page we are tracking all progress towards our goal is here. The T-shirt funds, gala donations...everything is going to funnel to that central progress bar to track our progress against our $100K goal. If you won't be able to attend the gala in August, consider donating there, or send a check directly to the IBC Network in Ashleigh's honor.
I can't say thank-you enough to all the individuals who are making strides like these to honor Ashleigh...though you will likely grow tired of hearing me try over the next month.
Just about all my posts reference that I'm not a big Facebook guy. Still, if you are someone who makes regular use of that tool I might ask you to consider re-posting, or sharing, or whatever it is the kids are doing these days. There are a few initiatives in the works to honor Ash that are in process, and I want people to be aware of them.
The first is an awesome T-shirt Fundraiser spearheaded by the amazing super-mom Andrea over at the blog Momfessionals. Ever since the passing of the tutu Andrea has been a real friend of our family and has used her status and influence in the blog-world to help us out at every turn. She is a great example of how to use whatever sphere of influence you have (whether that's cancer or just being an "average" mom) to effectively express faith in God. I wanted to get this in front of you today, dear reader, since the deadline appears to be wrapping up soon. Thank you, Andrea!
 |
| The famous tutu. I should really post some pictures of Ashleigh wearing this out on a date with me - she got so many stares of open avarice from teenage girls who think she looks like a princess (and I agree)! |
Along similar lines, there is a whole committee of folks actively working to make Ashleigh's dream of a gala event a reality. The progress these folks are making is truly phenomenal and a fulfillment of Ashleigh's vision. She couldn't plan it better herself - and that's saying something! We have a date: August 13, 7-10 PM at the home of a truly gracious lady in Preston Hollow.
 |
| The Gala Location! |
I'll share more details here as they come available, but for now save that date! Several influential friends in the cancer community that Ashleigh has made along the way have been instrumental in helping make this happen, along with two different fantastic event planners and a group of Ashleigh's close personal friends. The folks of Ally's Wish are helping to make this happen, and many many people and organizations are donating to the effort. It's shaping up to be exactly the swanky shindig that Ashleigh dreams it will be (though I think everyone involved would shy away from wanting it called a 'shindig').
Tickets will be $100, and I'll publish the Eventbrite registration page as soon as it's up. This is significantly less than the cost for a 'typical' society-event; Ashleigh wants it to be accessible for our friends to attend as a thank-you for all that they have done for us over the last year.
All of these efforts feed in to one goal that Ashleigh has: she wants to raise $100,000 for research into her specific type of disease. Triple-negative, inflammatory, metastatic: any of those adjectives in isolation are bad news in the cancer world. They are all indicators of aggressive, deadly disease and none of them receive very much attention from funding sources. Ashleigh's post on Pinktober covers some of the issues at play - suffice it to say (in an admittedly sweeping generalization) that the rarer, more aggressive types of cancer are generally under-funded but are actually what kills people.
On top of directly funding primary research, Ashleigh wants her legacy to be funding research for many years to come. So the funds we raise will go into an endowment that will pay out each year to directly fund research projects that would otherwise be overlooked and unfunded. Our hope is that this will allow our cancer charity of choice, the IBC Network Foundation, to have a consistent source of funding they can count on each year, indefinitely.
To this end, the central page we are tracking all progress towards our goal is here. The T-shirt funds, gala donations...everything is going to funnel to that central progress bar to track our progress against our $100K goal. If you won't be able to attend the gala in August, consider donating there, or send a check directly to the IBC Network in Ashleigh's honor.
I can't say thank-you enough to all the individuals who are making strides like these to honor Ashleigh...though you will likely grow tired of hearing me try over the next month.
Marked on the calendar! Praying for you guys so much!!! We were reminiscing on some Carcassonne last night- selfishly wishing you were still in Houston. Love you guys. Rachel and Ryan Hodge
ReplyDeleteI found your blog because my doctor at MD Anderson shared this post. I want you know I am praying for your healing. I have only recently been diagnosed and just finished 12 weeks of chemo. (I do not have IBC, but invasive with grade 3 tumor) I am so touched by your story and your family. May God touch and heal you.
ReplyDeleteHello Brad. I praying for both of you. You might want to look into a company called Provectus out of Knoxville, TN. Their website is PVCT.com. They are currently running Phase 3 Trials or Melanoma world wide and also offer a Compassionate Use Program for most cancers INCLUDING Breast Cancer in the U.S. at these locations.
ReplyDelete* St. Luke's Hospital and Health Network, Bethlehem, PA;
* M.D. Anderson Cancer Center, Houston, TX;
* University of Louisville, Louisville, KY;
* Sharp Memorial Hospital, San Diego, CA;
* Melanoma Institute Australia, Sydney, Australia;
* Princess Alexandra Hospital, Brisbane, Australia; and
* Royal Adelaide Hospital, Adelaide, Australia.
Their PV-10 drug is based on "Rose Bengal"; and industrial dye which has been used in the medical community for decades. From what I have read, after a single injection into the tumor, PV-10 ablates the tumor and also offers an immunilogical effect with also destroying distance tumors (other tumor that were not injected). There are very little (if any) side effects to using PV-10. Since it also seems to work on ANY tumors, they are currently beginning FDA Trials for the Liver. Other trials will soon follow.
Parties are encouraged to contact Peter Culpepper at:E-mail: pete@pvct.com
Blessing to you and best of luck.