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Sample
Letter to Media After Coverage of PWS: Request for More Positive Media Coverage
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[Date]
[Name]
[Title]
[Organization]
[Address]
[City, State Zip]
Dear [Name],
I am writing in regards to a report you aired today at [time] on your [name of
show/segment]. [Name of person covering story] covered the story about [name of
person with PWS in show and/or brief description of what show was about]. My
[age] [son/daughter], [name of child], has also been diagnosed with Prader-Willi
syndrome (PWS).
As you may or not be aware, there has been quite a bit of recent media coverage
on this syndrome (20/20, Discovery Channel, BBC, The Insider, Dr. Phil show,
People Magazine, Money Magazine, Star Magazine, and more) in addition to your
report. Many times, PWS is portrayed in a negative light and the media does not
depict the full scope of the realities of living with the syndrome. There are
many encouraging stories that give a sense of hope, but that are not shown.
For these reasons and others, I would like to create more "positive" awareness
around PWS in hopes of helping other families avoid the life-threatening
situation that, sadly, can be and are part of the struggles of dealing with PWS.
There is "a new generation" of PWS children about whom the public has yet to be
made aware. With the relatively recent FDA approval of growth hormone treatment
for PWS (2000), early diagnosis, and early intervention and education, infants
and children with the syndrome are experiencing a better future. Although the
severity of the syndrome varies for every child, many are doing so much better
than doctors first predicted at the time of diagnosis. With continued awareness
and funding for PWS research and support programs offered by Prader-Willi
Syndrome Association (USA) (PWSA (USA)), a diagnosis of PWS does not have to be
the horror that is often first experienced by parents, and it does not have to
be a horrid “life-sentence” for those living with the syndrome. This is the
story that needs telling.
There are more than [number] families in the [city/state/region] area alone with
children who have PWS, and these are only the families we know of through the
national PWSA (USA), which is located in Sarasota, FL. Based on the statistics,
it is safe to assume there are other local families who are unaware that their
infant or child has this potentially life-threatening syndrome. If given early
enough, a PWS diagnosis can be life-saving. It can also save the family from
years of isolation and trauma as well as thousands of dollars in medical
expenses.
I believe an in-depth, positive,
local story about PWS could provide invaluable, life-saving information to our
community at any time, but if you need an additional incentive for such a story,
May is PWS Awareness Month. If this is a topic you would like to explore
further, please feel free to contact me at [phone number]. I will assist you in
any way possible. Also, as I’m sure you are aware, you may visit the PWSA (USA)
Web site at www.pwsausa.org for
additional information about PWS.
If I do not hear from you shortly, I will plan to follow up with you. Your
consideration is sincerely appreciated!
Most sincerely,
[Name]
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