Consano – And making Lemonade out of Lemons
The tagline or subtext for this blog is “inspiring hope.” For me that means sharing projects and activities that I’ve encountered that really hit me and hopefully they will hit you as readers.
Via Twitter Friends, I’ve found out about the inspirational couple – Molly Lindquist and Scott Finkelstein. I was delighted to know that they would be joining the #HCLDR twitter chat on Tuesday July 16. I was ultimately saddened that it coincided with a time that I would be at the airport traveling. I promised I would write some of my reactions on this blog when it was quieter 🙂
I can’t say if it’s her story, his compassion, their worry for their children – or just the transformation that they have gone through — but I’m drawn in, I’m compelled to help in whatever ‘small’ way it might be. It could just be that I see how what they are doing is going to CHANGE the “game”!
Here’s some excerpts of what Consano is doing:
To provide a platform to enable individuals to donate directly to specific medical research projects, advancing medical progress and empowering individual action.
Hope. Honor. Heal.
You can fund research that will improve health treatments and outcomes for future patients and patients living with medical illness, providing hope. You can donate in honor of a patient who has either survived, is living with, or has passed away from a disease. You can fund specific research projects that have an impact on patient treatment, care, and survival. You can share your story, which spreads hope to others and hopefully helps with your own inner healing.
- T1: As healthcare leaders, what do you see as the benefit of a platform like Consano for Patients and Researchers? Challenges?
- T2: Who do you think might be most open to using the Consano platform and how can we reach them?
- T3: Scott will be presenting Consano during #MEDX. What information do you think is most important for him to share during this medical conference?
Here are my responses:
T1: As healthcare leaders, what do you see as the benefit of a platform like Consano for Patients and Researchers? Challenges?
For me as a parent of a undiagnosed child, it’s really hard for me to direct my donations to any ‘1’ organization for ongoing research. The idea of being able to crowdfund and support specific research programs gives me hope that one day Alexis won’t be in the ‘undiagnosed’ camp. I also realize that many times the questions facing parents in raising their medically complex child may not be on the radar of big philanthropic organizations. Some questions that have always perplexed those around me – what is the impact of unrepaired heart defect on weight gain? What is the relationship between parasagittal spikes and seizures? What is best way to transition from g-tube feeding? What is the best way for doctors and parents to communicate on medical issues? Consano provides an avenue for helping connect parents and researchers to work on little, medium, big projects TOGETHER. It’s about connecting people and providing an avenue to get answers.
T2: Who do you think might be most open to using the Consano platform and how can we reach them?
Personally I vote parents of medically complex parents! I also vote for Boston Children’s Hospital because for us, they have been particularly progressive and collaborative for Alexis’ care. She sees about 18 different specialists and I’ve been really impressed by the excellent care she has received – in collaboration and coordination. They are never surprised when I bring in alternative diagnosis and can quickly assimilate that information into their programs for Alexis.
I would also suggest unique syndromes – like Charge Syndrome Foundation as they already sponsor research – this might be an interesting mechanism for them to reach a wider community for fundraising/crowdsourcing. I imagine there are many of these low incident syndromes who lack the research might to fund traditional research projects.
T3: Scott will be presenting Consano during #MEDX. What information do you think is most important for him to share during this medical conference?
For #MEDX, I personally am biased to sharing the patient inspiration for this project. I realize it’s a great forum to share the current projects, the funding sources, the mechanics for setting up Consano – but my meager observation in the world is that face-to-face time is best served connecting people to the story. The Consano story is #COMPELLING. This is why I’m writing about it. It is the story of converting lemons into lemonade and reaching out to many others to benefit. As I wrote at the beginning, I don’t know if it’s the patient story, the caregiver story, the mother story, or the “I’m going change the world” story that draws me in. It has all of those aspects but most impressive to me, through the journey – Molly and Scott decided to work together to make an impact.
This is the same for me, working with others to make an impact. Too many times in the caregiver journey there is an opportunity to “woe is me” – but Consano shows that there is great opportunity to share experience and make an impact. Please go check out Consano and let’s help them make #REAL impact!