by Madeleine Darowiche
Being that September is Hydrocephalus Awareness Month, I would like to share with you one way that you can raise awareness in your local community. In July, I wrote a letter to the editor of my local paper, the Sun Sentinel, in an attempt to educate people about the importance of hydrocephalus research. Ever since the Hydrocephalus Association’s (HA) 12th National Conference on Hydrocephalus last year, I have been passionate about advocating for hydrocephalus. I was inspired to write the letter after having seen a sample letter to the editor on HA’s website under the Advocacy Toolkit. I submitted the letter with the understanding that many letters get submitted daily and it would be rare that it would actually be published. Well, a few days later, I saw that I had received an email from the editor explaining that the paper would like to publish it! As expected, I was pleasantly surprised. My advice for any teen contemplating submitting a letter to various news outlets would be to just try, as you never know what can happen.
I strongly feel that it is crucial to advocate for hydrocephalus because not many people are aware of the condition. I know the prospect of writing to media outlets can seem like a large task to some, but it is SO important to get the word out and help raise awareness to the general public. Remember, September is Hydrocephalus Awareness Month! What better time to make things happen? It is the perfect time for us to unite as one and raise our voices about the importance of hydrocephalus advocacy. I was apprehensive about writing at first, but I also realized that I could not be an advocate for this awesome cause if I did nothing. In most cases, the worst that can happen is that you do not receive a response. Do not let that discourage you, as you did something to spread awareness. That takes courage, so be proud of yourself. You are already such a strong person for living with this chronic condition.
I do have one suggestion from my experience. When writing your local newspaper or media outlet, it is very important to find out your local paper’s requirements. I used many ideas and facts included in the sample letter from HA; however, I had to make my letter shorter, as per the requirement of my local paper. So, keep in mind the word count maximum can vary depending on the newspaper. I would be sure to check the physical newspaper in addition to its website, as different stipulations and further details may be found in either source. With today’s technology, most newspapers allow a letter to be submitted via email, making the process incredibly simple.
I hope that having this condition will never stop you from achieving the things you want! You are not defined by this condition! Now go out there and do what you can, when you can, to raise awareness! Writing to your news outlets is just one way to raise awareness. Some other things you can do this month, or anytime, can include, but are not limited to, hosting awareness events, sharing facts about hydrocephalus, or participating in HA’s WALKs. If there is not a WALK in your area, sign up for a virtual WALK! Do not forget that when you raise awareness, it will make us that much closer to finding a cure! Small actions can change the world!!
For more information and ideas on how you can become involved and make an impact this month, read our Hydrocephalus Awareness blog.