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Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."

~ Christopher Reeves

How You Can Help!

Many of you have asked how you can help. Now is the time we need your help. The best thing you can do is help us have our voices heard! Please take a moment to contact your state senator or delegate. Don't know who they are??? Click "Who is my Legislator?" and you will be taken to the Virginia General Assembly page. Enter you address and your representatives will appear. You can contact them by email (most common), calling, or "snail mail"!!! We were told that if a representative gets 60 pieces of mail on an issue he or she is likely to pay more attention to it. So please this is the best way you can help.


What do you say??? Below I have a sample letter of what to write. You can put in your version of "Haley's Story". One of the biggest champions for Haley's cause was captured by a friend of mine writing to him and giving her version of what our family goes through. Make sure you mention the bill that is being proposed. Right now there are three pertaining to medical cannabis.

  • On the House side you would contact your delegate about HB 1445, Patron: Albo and HB 1605, Patron: Plum. (We have been working closely with Albo and he is very respected in the House, I suggest mentioning his bill.)
  • In the Senate, Senator Marsden has submitted a bill SB 1235 "Recommendation and dispensing of cannabidiol and THC-A oil.

Sample Letter to your Delegate/Senator

The sample letter below is provided to show the correct format for addressing your State Representative/Senator. It is impossible to provide one letter that would meet the needs of all; so, you will need to personalize your letter to address your concerns or issues regarding legislation. Please use the left-hand column as a guide for the format, but make the letter unique to your needs!

Return Address

Your Name

Address

City, V.A. Zip Code

Date

[Insert Date]

Representative’s/Senator’s Address

The Honorable [Insert Representative’s/Senator’s Name]

Office Address

Salutation

Dear Delegate/Senator [Insert Last Name]:

Introduce yourself: your name, address and school to identify that you are a constituent

My name is [Insert Your Name] and I reside at [Insert Your Address] in [Insert Your City], Virginia.


[Tell your personal connection and story]


I am a (family member/ friend) of someone with epilepsy..



Ex.

My daughter, Haley, has had uncontrolled seizures since she was five months old. She was diagnosed with Dravet syndrome, a severe, and catastrophic form of epilepsy when she was seven. She has not seen any relief from her seizures even after trying over 17 different pharmaceuticals, two medical diets, and an implanted medical device (A Vagus Nerve Stimulator, like a pacemaker for the brain). Haley is now 14 and functions with the abilities of a 2-5 year old. Despite being on daily doses of three pharmaceuticals, one of which is not FDA approved, and having the Vagus Nerve Stimulator she had over 1,023 visible motor seizures in 2014. She has many others called myoclonics which are too difficult to count. The number of seizures is up by 200 from 2013. We have been told by two specialist that there is NOTHING left for her to try. I wonder when she will be in a perpetual seizure and question how much more can her brain and body endure?




[Be specific with your suggestion, idea or request. If you are writing about a specific Bill, include the Bill Number -

Why are you writing your Representative/Senator?

for example, H.B. 1445]



-I am writing you to ask that you support H.B. 1445. This bill was recently introduced by Delegate Dave Albo In this bill Delegate Albo proposes to amend the wording of the current Code of Virginia pertaining to medical marijuana by adding epilepsy to the conditions listed. It also will make this law functional by changing “prescription” to “recommendation of a medical doctor”. Doctors cannot currently prescribe marijuana as medicine as it currently listed as a schedule I drug, but they can recommend it to patients who it could benefit. Marijuana has over 460 constituents and some of them have various medical applications such as, CBD and THC-A, which are non-psychoactive. Oils derived from marijuana can reduce seizures in children and adults who have severe intractable epilepsy.



OR



-I am writing to ask you to support S.B. 1235, "Recommendation and dispensing of cannabidiol oil and THC-A oil". This bill would allow patients suffering from intractable epilepsies to gain access to a potentially lifesaving medication. After failing three pharmaceuticals, patients with intractable epilepsies are estimated to have a 1% (1 person in 100 will show improvement) chance of the next pharmaceutical working. However, preliminary studies using Cannabis oil has show a 36% (36 people in 100 showed improvement) success rate! This doesn’t sound like a big deal, but it is phenomenal in a form of intractable epilepsy where NO pharmaceutical has worked in the past for these individuals.




I would really appreciate your support on H.B 1445/ S.B. 1235. Please let me know if you support this bill. If you have any questions please don’t hesitate to contact me at [insert email & phone number]

Ask for a response

Thank you for your time and considering my request.

Thank your Senator for his/her time

Sincerely,

Closing with your name

[Insert Your Name]

Haley on Dateline!!

Take Action!!


We were able to change laws in our state, but need help at the federal level. Please contact your congressman about HR 1635 and your senator about S 1333.

http://www.coalitionforaccessnow.org/take_action

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