The value of what we do
There is exciting news on the NET cancer front—and Dana-Farber is on the cutting edge of that news. Ten days ago, Lexicon Pharmaceuticals released some results of the TELESTAR Phase 3 of telotristat etiprate. The trials of that drug, run by Matt Kulke and Jen Chan, were successful to the point FDA approval of the first new drug since 1999 for carcinoid syndrome seems likely sometime in 2016. You can read more about it at walkingwithjane.org/news.
My eyes are firmly on that prize.
The research that led to that drug doesn’t happen without the effort of people like us raising the unrestricted money to fund it. And without the role we play, the resources for the next big breakthrough may not be there.
Raising the stakes
Telotristat is not a cure for carcinoid syndrome—or for NET cancer. But it will mean a dramatic improvement in the quality of life for many patients. And it may help buy them time to take advantage of the next big thing when it comes.
There is exciting news on the NET cancer front…
But we need everyone to lace up their sneakers in the days ahead so that we can find a cure to this awful disease—and I don’t need to tell most of you how awful that disease is.
Reason to sign up today
We have just 45 days to go before Walk Sunday. So far, we have 19 people officially on the team. That’s just one-third of our goal for the Walk.
…we need everyone to lace up their sneakers…
Many of you have said you plan to sign up officially soon. If you sign up before tomorrow, August 14, at midnight, the Jimmy Fund will mail me your Walk T-shirt and I will deliver it to you, along with our team shirt for this year, before the Walk. Otherwise, you will have to stand in line on Walk Day to get the official shirt.
By the numbers
As of today, we have officially raised $17,020 against our goal of $80,000. I know of about another $9-10,000 that is not yet in the Jimmy Fund Walk’s coffers. I expect to raise another $3-7000 personally between now and then between a miniature golf tournament and my summer fundraising letter. And the next 45 days were huge a year ago for everyone, so I think we can get there.
…45 days to go…
But we can’t without your help.
Landers tournament boost
A good chunk of the money we are waiting on is from the very successful Hank Landers Memorial Golf Tournament Jenaleigh Landers and her family organized on August 1. I thoroughly embarrassed myself with my lack of golf ability—but also thoroughly enjoyed the day. Jenaleigh is still paying off the bills, but the basic estimate is well above last year, which was our biggest single day fundraiser of the year for 2014.
…I think we can get there.
Jenaleigh’s event is north of Boston. I’d love to see us get additional tournaments west and south of the city next year. Let me know if you have an interest in doing one.
Upcoming and ongoing
Jillian Emmons’ NORWEX fundraisers are also doing well. Contact her about them on our NETwalkers Alliance Facebook Page.
I’d love to see us get additional tournaments…
I’ll be doing a booth at a craft fair in Somerset, MA August 22. If you are a crafter and would like me to sell some of your work as a fundraiser for your Walk, let me know and I’ll come get it. I’m trying to set up to be at another craft fair over Labor Day weekend.
Speaking of speaking
If you are doing a fundraiser of any kind for the Walk, let me know. If you have a group you’d like me to talk to, let me know. If you’d like to try to get either Jen or Matt to a fundraising event you are doing, let me know. Getting the word out about NET cancer is as important as raising money.
I’ll be doing a booth at a craft fair…
You’ll notice I am already thinking in terms of what we can do a year from now. It’s increasingly clear I need to turn into a year-round fundraiser. Research is expensive.
The work we do
But more important is saving lives: giving patients better, longer lives with their spouses, children and grandchildren. Jane wasn’t here for our 25th wedding anniversary last year. Our 26th is September 2. I know how horrible that day will be for me. I know how horrible it was to watch her die.
Research is expensive.
We’re fighting so that others can have those anniversaries, birthdays and other milestones Jane and I will never have. My eyes are firmly on that prize. We need yours to be as well.
Pax et lux,
Harry
