The 5p- Society of North America, along with support organizations from Argentina, Australia, Belgium, Brazil, Canada, Chile, China, Columbia, Denmark, Ecuador, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Japan, Malta, Mexico, Netherlands, New Zealand, Panama, Peru, the Philippines, Poland, Russian, Slovakia, Spain, Trinidad & Tobago, Turkey, and the United Kingdom, Venezuela, along with other countries around the world, are proud to announce that May 1-7, 2017 will be designated as Cri Du Chat Syndrome Awareness Week.
As most of you know, Cri Du Chat syndrome affects every country, race, gender, religion, political affiliation, and social class. Most people may not have heard about Cri Du Chat syndrome, but we are here, and our goal is to be known.
So, the week of May 1-7, we will stand together, hand in hand with friends and family, children and adults, old and young, rich and poor, from around the world, to say that we are here and we need your help to spread the word that Cri Du Chat syndrome exists.
Our goal is to end the outdated misinformation given to our families. Even living in the digital age, most people are unaware what Cri Du Chat syndrome is and what our society stands for.
Every year, there are children that are born with Cri Du Chat syndrome and due to the rarity of the syndrome and the lack of information, these children slip through the cracks and are not diagnosed, or are misdiagnosed. Every year, there are families that are presented with information, about their child's syndrome, from the 1970's. Stating that their child will not walk, talk, and may die at an early age. This information is not necessarily true, and something needs to be done about it. We are here to remedy these issues. Our hope is that we are able to raise awareness of Cri Du Chat syndrome and to get the most up to date information into the hands of medical professionals around the world. We don't want another family to slip through the cracks and for another family to live in fear that their child may die at an early age.
To aid us in raising awareness of Cri Du Chat syndrome we are currently in the process of finishing up an awareness week website. The website will be located at: https://fivepminus.org/
The website is going to be a place where we will be posting events from around the globe, as well as information about Cri Du Chat syndrome. We are encouraging everyone to plan an event, during this week, to help spread awareness. If you plan an event please let us know and we will be happy to add it to the website. We also want photos and video of your event, to post on the site.
We have also created a store where you can purchase Cri Du Chat syndrome merchandise. The items can be found at: http://www.cafepress.com/5PShop.
So, once again, we ask that you join us in this unprecedented event, as we stand together, hand in hand with friends and family, children and adults, old and young, rich and poor, from around the world, to say that we are here and that Cri Du Chat syndrome exists.
If your country is not listed and you would like to participate, please feel free to contact us.
Instructions for Grass Roots PR Campaign for Cri du Chat Awareness Week
If the goal of Awareness Week is to let people know that our Community is out there, then there’s no better way to do this than through public relations (PR). Getting stories written about you, especially by local media outlets, is not as difficult as you may think. The reality is, editors are desperate to fill their newspapers full of relevant stories. This is a difficult job, and you providing them with a well-packaged story makes their life a bit easier.
The best way to get reporter interest is by making the story “local” to your area. Feature things that you are doing in the community to spread awareness about CDC.
Different reporters in your local media outlets cover different story segments. You must get in front of reporter who covers the local healthcare beat, or local events (the former being the better source). The easiest way to do this is to “partner” with the medical group that your child’s pediatrician belongs to, or the hospital through which he or she is affiliated.
Hospitals and the bigger medical groups all have PR departments (or outside PR vendors) who try to get favorable press. They are also always looking for freebie story ideas where they get a press mention and have to do no work.
Ask your medical group if they will give you their press list in exchange for a favorable mention in the article. Remember, you will be pitching reporters, not the media person in the medical group.
Also, most of these groups have blogs, newsletters and social media pages where they can paste your story. Ask if they will share it with their readers. Again, it’s difficult to come up with original content, so they will likely be happy to oblige.
Here are some forms and step-by-step instructions to execute a PR strategy:
- 2017 General Press Release for Awareness Week 2017. Download the official press release from the 5P- Society
- Adapt the form Press Release in Exhibit A to feature your personal story. The areas you should change are highlighted in yellow. The more “local” you can make your story, the better chance you have of your story getting picked up by the media. Feature any events you are hosting locally.
- Contact your child’s doctors’ offices and ask if they can get you the name, phone and email for the PR or marketing departments of their medical group and/or affiliated hospital. You can also find these persons directly by going to their company website and looking for a link to “Press Contact” or “Media Contact”.
- Use the form email in Exhibit B to reach out by email, or use the content as a script to make a phone call.
- If you reach out by email and don’ get a response within a day, call the office.
- Contact the hospital/medical group marketing person. Use the form email in Exhibit C and also call them. Remember, the goal is not to get this person to pitch your story to reporters for you, but to get them to give you their list of media contacts and allow you to use their name when contacting reporters (so you are not reaching out cold). You also want to ask if the medical group/hospital has any “in house” newsletter or website that they could feature a story about your child and their doctor.
- About a week prior to Awareness Week: send a “story pitch” email to the reporters on your list. Use the form email in Exhibit D. Remember to attach a copy of your press release. Follow up with a call.
- If your story gets picked up by the media, please email a copy or link to Laura Castillo at firstname.lastname@example.org.