Thursday, February 27, 2014

Rare Disease Awareness Day #freejustina

Tomorrow is Rare Disease Awareness Day.  What a great time to revisit the Pelletier case!  I have to admit I am rather at a loss!  The parents have done all they could.  Monday they show up in court thinking they would have their daughter returned to them, a little over a year after she was taken away, but the judge instead ruled Justina would be placed in foster care versus going home to her family (Father, mother and three sisters). Once the news broke about what was going to happen to Justina people immediately began to speak out and call for a vigil at the foster care facility in Merrimac.  When the foster care group home heard the negative press, the protests and all the drama associated with housing Justina they quickly declined.  What do I say about that?  Way to go!  Glad the voice of the people can still intimidate someone!

Photo curtsey of
Massachusetts Representatives Marc Lombardo and Jim Lyons seem to be among the few people in the state that have some common sense! 

“The Pelletier case is a dispute between conflicting medical opinions… the decision on which medical treatment to adopt should rest with the parents, not with DCF. The Department’s heavy-handed, unjustified interference with the rights of these parents is an example of what is wrong with this agency,” said Rep. Jim Lyons (R-Andover).

WOW!!! Congratulations sir! You are brilliant! These two legislators along with 12 others are looking to introduce a bill into the House to ask for the release of Justina to her parents.

So what can YOU do to help? Most of it is pretty simple yet VERY effective!

1. You can participate in the Thunderclap event set up for March 16th at 9am. What is thunderclap you ask?
I had never heard of it either but Thunderclap is a platform that allows you create a message, then other users can sign up for it with their facebook, twitter, and instagram accounts. On a specific day and time, thunderclap will then use everyone's accounts (don't worry it doesn't save your passwords and stuff) to post that same message. It ONLY posts it ONE time, but when 40,000 people sign up with twitter, facebook, and instagram, then that same message is sent out 120,000 times. Social media EXPLODES. I love the concept and I signed up! Here is the link:

2. You can go to each Massachusetts Representatives Facebook page and comment either thanking them for supporting the resolution to free Justina or politely asking that they do and hashtag ‪#‎freejustina‬. There are hardly any comments on these FB pages right now. 

These following people deserve a round of applause for having some common sense! They are currently support the resolution to #freejustina.

Mr. Marc Lombardo of Billerica

Mr. Jim Lyons of Andover

Mr. Matt Beaton of Shrewsbury

Ms. Leah Cole of Peabody

Mr. Geoff Deihl of Whitman

Mr. Angelo D'Emilia of Bridgewater

Mr. Ryan Fattman of Webster

Mr. Paul Frost of Auburn

Ms. Colleen Garry of Dracut

Mr. Jim Miceli of Wilmington

Mr. Frank Morgan of Lawrence

Ms. Shaunna O'Connell of Taunton

You can contact the other members of the House either on Facebook or at the following website to ask them to join in supporting the resolution:

3. You can contact the following officials and let them know you are concerned about the Justina Pelletier case:

Martha Coakley
Attorney General of Massachusetts(candidate for Governor)
One Ashburton Place
Boston, MA 02108-1518
617-727-4765 (TTY)

Joseph F. Johnson
Essex County Juvenile Court
Lynn Session
139 Central Avenue
Lynn, MA 01901
(781) 586-0415

Dannel P. Malloy
Governor of Connecticut
State Capitol
210 Capital Avenue
Hartford, CT 06106
800-406-1527 (toll-free)
860-524-7397 (TDD)
860-524-7395 (fax)

Deval Patrick
Governor of Massachusetts
Massachusetts State House
Office of the Governor, Room 105
Boston, MA 02133
888-870-7770 (toll free in state)
617-727-3666 (TTY)
617.727.9725 (fax)

Olga Roach
Acting Commissioner
Mass. Department of Children and Families
600 Washington Street
Boston MA 02111

Even after we have Justina home lets all remember that this is more than just a fight for Justina.  This is a fight for parental rights, for the rights of mental health patients, protection to children and families with rare and undiagnosed diseases. It is SO easy for a medical professional to accuse parents of medical child abuse when they have a child that has a rare or undiagnosed disease.  Tomorrow is Rare Disease Day!  What a great time to do your part in helping Justina, who suffers from the rare disease of mitochondrial dysfunction, along with helping to protect the rights of so many other people!

Speak up, Speak out!  Go and do your part!  Please dedicate 15 minutes out of your day helping such a great cause!

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