Thought I would share one of the many emails I get on a daily basis for my blog this month. I’m blessed to hear from so many other T1 Families around the world:
Subject: Type 1 in Tasmania
My son has T1, diagnosed about 18 months ago. For some reason, destiny? I have taken on a role as someone looking to find a cure. I have organized a JDRF walk and am researching the disease constantly. Hence how I came upon your site.
I want to take it to the next level however and after reading your story I want to do a similar thing. I live in Tasmania Australia where the incidence of Type 1 is quite high, but it seems as though there is no great urgency to find a cure which really frustrates me. As though people are quite happy to accept the fate of their children’s disease.
Can I ask some questions? Were you working full-time when you started writing your book? I feel like I want to devote my life totally towards finding a cure for my son, but the bills have to also be paid!
I have been thinking about flying to the States to visit Dr Faustman, from your experience do you believe this would help?
Why don’t organizations just pool together and jointly look at ways of finding a cure? Is it about ego and wanting to be the first to find a cure? It took a team of people to get Sir Edmund Hillary to the top of Everest!
There is a conspiracy theory that large drug companies will not want a cure found as their profits will be affected, do you believe this?
That’s probably enough for today, I hope you can help me find a cure for my son.
A T1 Dad from Tasmania
Dear T1 Dad from Tasmania,
Thank you for your email, I love to connect with other T1 parents.
Your questions are very engaging, so I would like to answer this email in greater detail than I would normally. I’d also like to use this for my next blog entry if that’s okay? I will remove any identifying names of course.
Let’s answer some of those questions, shall we:
1.) Were you working full-time when you started writing your book? I feel like I want to devote my life totally towards finding a cure for my son, but the bills have to also be paid!
Prior to my daughter’s diagnosis, six years ago, I ran my own mobile ultrasound business for veterinarians. On our first night in the hospital, I knew without a second thought that I would be giving up my business and focusing my attention on my daughter’s needs – devoting my life totally towards finding a cure – hmmm, sound familiar?
We went through very difficult times financially, which improved slightly when I became a wellness facilitator working from home. However, when I got the idea to write “A Cure for Emma” and create online communities striving for our shared goal, this left little time for seeing clients and its associated income. Fortunately, in my situation, my husband’s earnings have filled in the gaps and we have managed to make things work out, so far. I don’t believe this is a practical road for many, however (not to the extent I have taken it); mostly for financial reasons.
I’ve traveled down this advocacy path based on intuition and unwavering faith as many T1 parents do. I literally get hundreds of emails, every day, which I feel honored to receive. I’ve invested years towards networking, writing, speaking, book signing events… all at my own expense, and although “A Cure for Emma” has been very successful, authors see little of actual book sale profits.
“A Cure for Emma” will not be the financial tipping point to allow Dr. Faustman’s work to move forward. Oh, how I wish it was! But I do believe it will make a significant difference in spreading the word on the work Dr. Faustman is doing! Just receiving your email is evidence of this. Writing is an excellent way to spread awareness within our community, helping to shift the consciousness of this problem and bring forward the cure for our children.
That was the long answer to your question – the short answer would be… Follow your heart to do what you are able to do. We can ALL make a difference on this road to the T1 Cure; any amount of time that can be spared is helpful.
2.) I have been thinking about flying to the States to visit Dr Faustman, from your experience do you believe this would help?
That would definitely be fun, but it’s not necessary. Thankfully, Dr. Faustman has a wait list of volunteers at least ten months long. Our family goes once a year so that my daughter can provide blood samples for their research. We also retain a glimmer of hope that our daughter may be among the few who will be chosen for Phase II of Clinical Trials. However, I don’t believe it truly matters who is chosen for Phase II (which is pretty much a lottery draw.) What matters, is that there IS a Phase II.
So, although it may seem difficult to contribute from the other side of the world, you CAN still help by donating to the Faustman Lab: http://give.massgeneral.org/acureforemma , and or passing along her information by word of mouth or writing. I don’t believe that a trip to Boston is a must.
3.) Why don’t organizations just pool together and jointly look at ways of finding a cure? Is it about ego and wanting to be the first to find a cure? It took a team of people to get Sir Edmund Hillary to the top of Everest!
Ohhh… I couldn’t agree with you more!! This is the reason I created “Type 1 Diabetes Cure – Global Headquarters”; to begin the process of our researchers sharing information with each other and the T1 community, in one location…baby steps. The Diabetes Research Institute in Miami Florida is also focused on making this happen with T1 Scientists around the world.
I actually have a dream of a T1D Cure GHQ Summit one day, as I have no doubt that reaching the top of THIS particular T1D Mountain, will take everyone working together… The money… The science… and the T1 community!
4.) There is a conspiracy theory that large drug companies will not want a cure found as their profits will be affected, do you believe this?
Is it a conspiracy or just the hard cold reality of business? There unquestionably is more profit in maintaining a disease than curing it.
I have learned a great deal from our researchers on T1D Cure GHQ over the past year. With the connections I have made within this community, I must say that I find it difficult to believe there could be a top-secret mandate for every single person who works in the health care profession to suppress cure breakthrough’s from the world’s population; especially when I know that many people who work in these industries are personally affected by T1 and are truly motivated to find the cure. It’s an issue that is very difficult to comment on. Perhaps a better question could be – how can we ensure that drug companies will promote cure progress?
To this, I would say… We’re doing IT, right now! Egyptian pro-democracy protesters overthrew their dictatorship by embracing Twitter, YouTube, Facebook and Twitpic last year. Information is a very powerful and effective tool and is available to everyone.
Accurate, real-time advocacy WILL make a difference. It may take some time and perhaps our very own children will be the ones leading the way within these companies before too long. Until that day… we need to keep doing what we’re doing. Advocating, writing, and sharing.
Thank you for your most appreciated email. I hope this reply is helpful to you and I am grateful to know a fellow T1 warrior… from Tasmania! I truly believe that there is a cure for type 1 diabetes and bringing our community together WILL bring it into our lives!
I look forward to any further questions you may have.
T1 Mom, Advocate & Author
Video Promo for “A Cure for Emma”: