"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Tuesday, April 8, 2014

Minnesotans, we need your help now!

***Please read the update at the bottom - added 4-9-14.***

Why We Need Your Help Now
We received some very encouraging news today regarding the Medical Marijuana bill in Minnesota!! After not hearing much for awhile, today it was announced that the bill is going to be added as an amendment to a current health policy bill that is expected to be heard on the house floor tomorrow!!!! The amendment basically adds the text of Rep. Melin's medical marijuana bill to the more broad health policy bill. It is likely that the House will vote on this tomorrow (Wednesday), sometime after noon.

A few things have changed from the original bill... "marijuana" is now referred to as "cannabis", smoking and home cultivation have been removed as well as a few other minor things. This is great and exciting news!! The most common concerns some had with the original bill were allowing patients to smoke the marijuana (of course Luella would not) and allowing patients to grow their own if they lived too far from a dispensary. We are hopeful that with these changes and by adding it to an existing health policy bill we will now see some widespread support for it!!

Please Do This Now 
Minnesota residents, please call and email your representative now and ask him or her to vote “yes” on H2402A53 and then ask your friends and family in Minnesota to do so too.

Find your representative here:
Click on their name to find their email address and phone number.

The Marijuana Policy Project has already written an email that you can send to your representative by filling out a form. It will even figure out who your rep is for you.... https://secure2.convio.net/mpp/site/Advocacy?pagename=homepage&page=UserAction&id=2515

The bill that Rep. Garofalo intends to amend is HF 2402. The Amendment is 2402A53. http://www.house.leg.state.mn.us/cco/amendmentall.asp

UPDATE - added April 9, 2014
Unfortunately the hearing for this bill has been postponed now until after Easter... however, that gives you all more time to contact your representatives to ask for their support.

The Senate medical marijuana bill has been scheduled for a hearing in the Committee on Health, Human Services, and Housing tomorrow morning (April 10th at 8:30am). If you have a Senator on this committee - http://www.senate.leg.state.mn.us/committees/committee_bio.php?cmte_id=3059&ls=88 - please ask them to support SF 1641.

Thursday, March 27, 2014

KELOLAND News Link and Please Write Your Elected Officials

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

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:

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:

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.

Sunday, March 23, 2014

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

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.


 White House Petition

Thursday, March 20, 2014

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!


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.

Thank You!

Thursday, March 13, 2014

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

Gov. Mark Dayton, though pessimistic, breathes a little life into medical marijuana bill

Dayton seeks medical marijuana compromise after meeting with families

Dayton Downgrades Chance Of Medical Pot Passing

Dayton Meets Marijuana Advocates - Fox9

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!