The case of Exondys 51 poses emotionally charged issues for families of young boys with a rare illness, who are fighting companies to get coverage for an expensive drug approved on a lower bar of proof.
NYS Entity Status
NYS Filing Date
APRIL 23, 2014
NYS DOS ID#
NYS Entity Type
DOMESTIC NOT-FOR-PROFIT CORPORATION
2014 - ALEXANDER'S AWARENESS - A LOOK AT TRISOMY AND RARE DISEASES, INC.
AROUND THE WEB
- Insurers Battle Families Over Costly Drug for Fatal Disease
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- Syntimmune Snares $50M to Test Autoimmune Drug in Two Rare Diseases
By Frank Vinluan - Wednesday Jun 21, 2017
Although antibodies play a key role in neutralizing invading bacteria and viruses, sometimes these protective proteins can turn against the body’s own tissues, sparking an autoimmune disorder. Syntimmune’s leaders believe their company has found a way to block the immune system’s attack on the body. And now the biotech has $50 million to advance its […]
- How Microsoft’s Rare imagined the pirate world of Sea of Thieves
By Dean Takahashi - Wednesday Jun 21, 2017
Sea of Thieves is a silly pirate game where you can board an enemy ship by being shot out of a cannon. Microsoft’s Rare studio has been working on it for a few years, and it is looking better each time I see it. The title is a massively multiplayer online game where you can […]
- Clear Channel Signs On To MS Awareness Campaign In Boston
Wednesday Mar 5, 2014
Clear Channel has signed on to a campaign to help promote awareness in Boston of the neurological disease Multiple Sclerosis. As part of the campaign, Clear Channel will place messages about theillness on the digital billboards it controls in the Boston area. In addition, Clear Channel, which also manages advertising for Boston's South Station, will flash the color orange hourly on thestation's digital billboards to symbolize the fact that a person is diagnosed with MS every hour. South Station's exterior lighting will also be changed to orange.
- Hodgkinson's Disease
Thursday Jun 15, 2017
An inability to accept the facts about a shooting.
Are you top of mind? Three types of awareness you should be tracking
Tuesday Dec 13, 2016
Most nonprofits strive to increase their own visibility through their marketing and communications efforts, but few actually track if it’s working. When we launched the Brandraising Benchmark in 2016 to help nonprofits track their own levels of awareness and engagement cost-effectively, our partners at Ipsos were full of valuable insights. In this article, Nicole Zacotinsky, an account manager at Ipsos, sheds light on three types of awareness worth considering. - Sarah.
What is awareness and why is it important to measure?
Whether or not people are aware of you is the foundation for any type of interaction with your organization. Measuring your awareness tells you where you stand, and repeating that measurement over time will tell you if your organization is increasing its awareness, decreasing it, or if it’s stagnant.
In order to understand a brand’s awareness, it needs to be measured with some type of frequency (monthly, yearly, bi-yearly, etc.). Your initial measurement becomes your benchmark or baseline, and as long as it’s measured in a similar manner (same questions among the same population) at the frequency you’ve determined, then upticks or downticks in awareness will show any impact your organization is having.
There will always be some “ghost awareness” (a % who claim awareness but aren’t actually aware) to some degree; however it is expected that the ghost awareness will remain consistent year on year. Therefore, the change in awareness year on year is much more important than a baseline awareness number and changes up or down in awareness trends that are are perceived to be real.
There are three types of awareness
There are three different types of awareness. There is prompted awareness: when asked, people tell you they know the organization when picking them off a list. There is unprompted awareness: when asked, people come up with the organization on their own without having to look at a list to say “Oh yeah, I know them.” And, as a subset of unprompted awareness, we have top of mind, meaning that when asked it is the first brand people tell you unprompted. The more you can get your target audience to come up with your organization’s name unprompted, the deeper the individual’s connection is to your organization. Being top of mind makes that connection even deeper. Brand awareness is important because the faster your nonprofit comes to mind, the easier it is to remember what it stands for and for a person to take action or donate.
What do I do with my awareness measurement?
The more your organization is able to put their name out there and drive awareness, the more your target population will show interest. You can put your organization’s name out there through social media buys, blog posts, and social events. A great example of this is ALS and the ice bucket challenge. They were able to raise $220 million in a year through a viral social media efforts. However you do it, ultimately the goal is to give them a reason to increase their share of wallet (donations) to you rather than another organization.
Interested in benchmarking your nonprofit’s prompted awareness? Big Duck’s upcoming Brandraising Benchmarks are all online here.
- Food & Wine Magazine Will Leave New York for Alabama
By STEPHANIE STROM - Friday Jun 23, 2017
The move reflects a changing business in which traditional food magazines, and a Manhattan address, are less important.
- On the Runway: Ken’s New Look(s), Deconstructed
By VANESSA FRIEDMAN - Wednesday Jun 21, 2017
The diversification of Barbie’s boyfriend has also resulted in his fashionization — and a man bun. Is that a good thing?