KELOLAND News Link and Please Write Your Elected Officials

Luella’s story made the news again, you can watch her segment online here:

http://www.keloland.com/newsdetail.cfm/medical-marijuana-politics-concern-luverne-family/?id=162235

Gov. Dayton has recently proposed replacing the medical marijuana bill with a research study.  More research into medical marijuana is great, but we have some serious concerns with this research counter proposal like:

1. It’s based on a 1980 medical marijuana research law that MN already has, but no one has ever been able to access medical marijuana under that  law.  It doesn't make us overly confident that this new medical marijuana research bill would work any better.
2. If the research proposal does actually work, how quickly could it be set up and running?  The medical marijuana research that has taken place in the U.S. usually takes years to get going.
3. Even in the best case where this research proposal works, it’s very limiting in who can partake in the research.  Only some of the pediatric patients with refractory epilepsy would qualify. This proposal leaves out others suffering with severe illnesses and a great need for medical marijuana access.

While we have serious concerns about the research proposal at the same time we also find it very encouraging to think that Luella could be part of this research.  There is one right answer to this dilemma, the medical marijuana research proposal should be added to the existing medical marijuana legislation.  This would give the seriously ill and suffering patients the (relatively) quick access they need to this medication.  At the same time the research (that everyone wants) could continue to move forward.

While we’re hopeful that our Rock County legislators will support the current medical marijuana legislation, it certainly doesn't hurt to let them know how many in Rock County support this treatment option.  You can easily email your MN legislators via this web page:
https://secure2.convio.net/mpp/site/Advocacy?cmd=display&page=UserAction&id=2457

They already have a pre-canned email typed up if you don't want to write your own.  Please let your legislators know that you support the medical marijuana legislation

We also encourage you to continue mailing (see our 21JAN2014 blog post for details) and emailing Gov Dayton.  Ultimately he’s the one that will decide this bill’s fate.  If he comes out in support of the medical marijuana legislation it’s sure to become law.  If he continues to oppose the medical marijuana legislation its outlook is much bleaker, but there’s always the chance he’ll have a change of heart at the last minute.  Especially if enough of our legislators support it (so call and email your legislators).

Don't forget to sign the White House petition to allow more medical marijuana research:
http://wh.gov/lpiAh

KELOLAND News Follow-up -- Tonight!!

KELOLAND news was at our house this morning to get our reaction to the status of the medical marijuana bill in MN. The update will air tonight at 10:00 on MyUTV, then again at 11:00 on the regular KELO station after basketball. I will post the link to watch it online after it airs if you miss it.

Update - Purple - Why? - Sign

Lots of little bits to include here... but all very important. Please read.

Luella Update
Luella ended a 15 day seizure-free run on March 15. She had a great first half of the month. On the day before her seizure she was able to walk the entire length of the balance beam at her DAPE class without falling off once!! She hasn't ever done that before and she did it THREE times that day!! It was great to see her taking her time and being so careful! Usually she won't slow down and ends up falling off. She was also able to balance on one foot for longer than normal as well. I'd like to think going 15 days without a seizure helped her to have more balance but it's really hard to know for sure. After her seizure on the 15th she had another one on the 19th... that one happened at church and she ended up falling. I'm praying we can finish out the month with out another one! Luella has been a bit of a challenge behaviorally the past week or so too. Simple little things just set her off and we have lots of tears. I asked her if she wanted a pickle the other night with her supper.... she said "no" so I walked away from the pickle jar. She immediately started crying that she DID want a pickle so I turned around and got her a pickle, then she proceeded to have an enormous melt down because she said she did NOT want the pickle. We go through many sessions of indecisiveness throughout the day.

Purple Day for Epilepsy
Many of you know November was Epilepsy Awareness Month, but March 26 is Purple Day for Epilepsy!! If you couldn't wear purple all month long in November - I forgive you! :-) Wednesday is your chance to wear purple for ONE DAY and show your support for Luella and those with epilepsy around the world!!

Why do we wear purple??
We need to raise awareness to help those with epilepsy so better treatments can be found and hopefully someday... a CURE!!

These precious little angels have lost their battle. This is a tribute video of some of the special Dravet syndrome children we have lost in 2013 and so far in 2014. I pray for these families and the emptiness they must feel. I pray that we will never have to add our precious Luella's picture to a video like this!

Watch the video here: http://youtu.be/T1ote0DdUjI

PLEASE SIGN!!
If you haven't already signed the White House petition to reclassify marijuana to make research easier... PLEASE take 2 minutes to do it now. So far there are just over 2,000 signatures... we need 100,000 before April 19th to get a response from the White House!! Please HELP!! Share this and pass it on! You will need an account to sign the petition - just click the blue "Create an Account" button near the middle of the page.

https://petitions.whitehouse.gov/petition/ask-dea-reschedule-marijuana-lower-level-benefit-greater-access-research-purposes/vJVF409k

Start at the Top

If you only sign one of the petitions I share... THIS is the one!! Please sign this petition on rescheduling marijuana! This needs to happen at a federal level to make researching marijuana easier. More research equals more understanding and greater acceptance!

WE PETITION THE OBAMA ADMINISTRATION TO:

Ask the DEA to reschedule marijuana to a lower level to benefit greater access for research purposes

20 states and DC have legalized the medical use of marijuana. People living with uncontrolled seizures have reported beneficial effects and reduced seizure activity when using medical marijuana. A lack of research is a major concern for public health and patient safety, consistent dosage, and potential side effects. However, the hope provided for some is highly sought by families in need. Unfortunately, because marijuana-based products including the non-psychoactive cannabidiol are Schedule I drugs, it is very difficult for researchers to perform needed studies. We urge the Obama administration to ask DEA to reschedule marijuana products so researchers can study the benefits and side effects of this treatment option that could potentially help millions of people living with epilepsy.

SIGN THE PETITION!!

https://petitions.whitehouse.gov/petition/ask-dea-reschedule-marijuana-lower-level-benefit-greater-access-research-purposes/vJVF409k

Thank You!

There is still HOPE...

Thank you to all who paused today at 12:30 to pray for the status of the medical marijuana bill in Minnesota!! Governor Dayton appeared to really listen to the needs of the people gathered in front of his mansion today. We are hopeful that something may still come of this bill! Several news outlets are reporting on the day. Please read if you are interested. Thank you for your continued support!!

Photo: Glen Stubbe, Star Tribune

Despite lack of support so far, Dayton gives hope to medical marijuana supporters in private
http://www.startribune.com/politics/statelocal/250207481.html

Gov. Mark Dayton, though pessimistic, breathes a little life into medical marijuana bill
http://blogs.citypages.com/blotter/2014/03/dayton_medical_marijuana_new_life.php

Dayton seeks medical marijuana compromise after meeting with families
http://www.twincities.com/politics/ci_25337989/dayton-orders-staff-look-into-medical-marijuana-compromise

Dayton Downgrades Chance Of Medical Pot Passing
http://minnesota.cbslocal.com/2014/03/13/dayton-opens-up-about-tug-on-medical-marijuana/


Dayton Meets Marijuana Advocates - Fox9
http://www.myfoxtwincities.com/video?clipId=9944606&topVideoCatNo=237345&autoStart=true
KMSP-TV

Prayers at 12:30 today!

Would everyone pause to pray today at 12:30 when a group of people plan to demonstrate at the Governor's mansion? Please take a minute to say a prayer that Governor Dayton will see the need that exists and that he would help these children and people have a better life. That he would do the right thing! Thank you!! We can't be there today but I believe in the power of prayer! Please join us!

Urgent!! MN Bill in Jeopardy

We NEED your help!! The medical marijuana bill is in jeopardy in MN. The bill's author Rep. Carly Melin tried to come up with a compromise this last weekend. The proposed changes would make our medical marijuana law the strictest in the nation. For example they removed the smoking and grow at home provisions, you can read the full list of concessions here:
http://www.house.leg.state.mn.us/members/pressrelease.asp?pressid=8312&party=1&memid=15373

Unfortunately these changes weren't enough to gain approval for the bill, so the bill is currently on hold. Unless Governor Dayton shows some compassion soon this could very well be the end of the bill this session!

What can you do?
Sign (and share) this Petition 
Urge Governor Dayton to “stand up for patients”! https://www.change.org/petitions/gov-mark-dayton-stop-bowing-down-to-law-enforcement-and-stand-up-for-patients

Send an email or call Governor Dayton (and share this link)
http://control.mpp.org/site/MessageViewer?&em_id=72201.0

Go PROTEST! 
Medical marijuana patients and advocates will be gathering at the Governor's Mansion on Thursday at 12:30 pm to deliver some personal messages!!

Talk and Educate! 
Talk to your government friends. Share this post or the direct link to the petition with all your friends and ask them to share as well!!

Watch and Educate! 
Gupta: 'I am doubling down' on medical marijuana - CNN.com
http://www.cnn.com/2014/03/05/health/gupta-medical-marijuana/index.html

Watch the two Dr. Sanjay Gupta CNN specials below.  They do a great job of explaining the medical marijuana debate:

Dr Sanjay Gupta's CNN Special "WEED" - YouTube (from last year)
http://youtu.be/Z3IMfIQ_K6U

Dr Sanjay Gupta's "WEED 2" Documentary - YouTube (from Tuesday)
(all three of these links go to the same video, I posted a few links in case one quits working)
http://youtu.be/tAFu-Ihwyzg
http://youtu.be/RRbEgSs7KnY
http://youtu.be/XsuhMw_ZWeg

Please Watch and Share! ...and MN Medical Marijuana Bill update

I wanted to give everyone a heads up to watch or set your DVRs to record CNN on Tuesday night.  Dr. Sanjay Gupta will present "Weed 2: Cannabis Madness". It looks like it airs at 9pm central time but please check your local listings to verify the time. This is the second part of CNN special that aired last year. Last year the video featured Charlotte Figi a Colorado girl with Dravet syndrome who went from 300 seizures a week down to about ONE since she's been taking a special form of medical marijuana. This part 2 features Vivian Wilson a New Jersery girl with Dravet syndrome. We met Vivian's mom Meghan at the Dravet conference a couple years ago. The Wilsons just moved to Colorado to get access to the medication their daughter needs!

Read more about the special here:
http://www.cnn.com/2014/03/05/health/gupta-medical-marijuana/

Weed 2: Cannabis Madness: Meet Vivian
Direct link to video if you are viewing in email: http://www.cnn.com/video/data/2.0/video/health/2014/03/06/orig-weed-2-meet-vivian.cnn.html


Minnesota Medical Marijuana Bill Update
Last Tuesday the first committee heard HF1818 (the medical marijuana bill). The House Health and Human Services Policy Committee members heard over three hours of testimonies from families who desperately need access to this medication for their children or themselves. A few of the families we have gotten connected with on facebook were their sharing their stories and representing the need we all have. The stories are so sad!
(If you are interested in watching the testimonies you can see the link to watch it here: House Health and Human Services Policy Committee - part 2)

The bill passed the House Health and Human Services Policy Committee with a voice vote majority in support of the bill! YAY!

When I asked what steps this bill would go through, this is the answer I got from Heather Azzi, the Political Director of Minnesotans for Compassionate Care...
 "Between the House and the Senate, this bill will go through about 8 policy committees. The policy committees will be followed by finance committees and then a vote on the floor of each body. If the Senate and House bill are identical, it will go on to the governor. If they are not, there will be a conference committee to work out the differences before it goes to the governor." It must pass each committee!

The bill's next hearing will be on Tuesday, March 11th at 10 AM. The bill will be heard by the Government Operations Committee.

This is definitely not a quick process!! We need prayers along the way that our law-makers will see the need and understand the impact this bill could have on so many!

One of the mom's on our MN Pediatric Cannabis facebook group put together this video with some of the many children in MN who are waiting for this bill to pass! Please watch and share. And grab a tissue! Luella is included in the video as well.

HOPE LOVE CURE HF1818


Direct link to video if you are viewing in email: http://youtu.be/6m03CIUKYfo

Jesus Loves Me

Luella singing Jesus Loves Me on March 2, 2014. (If you are reading this blog post in your email you'll need to click the link below to watch the video.) We are so blessed our little Luella can do this, so many little ones with Dravet can't. We pray we will always be able to hear this precious little girl singing her heart out! And praying for those that have lost this ability... may God heal and restore!





Watch on YouTube: http://youtu.be/z1y2-Qhx4_g