If you have a child with special needs, a rare genetic condition or a chronic illness, you probably have already heard of "The Mighty" website and all that they do to share awareness to such things. If you haven't heard of it, I highly suggest you check it out! They have many conditions listed in alphabetical order, so if you have a loved one with a life-changing medical condition - look it up! You might just learn something and gain a new perspective as well!
I have read countless stories and articles within those pages that I could relate. Their website has single-handedly helped me to not feel so alone in our journey of a rare diagnoses in addition to the very real struggle of special needs parenting.
I am honored and thrilled to say that the piece I wrote on Genetic Testing was published on The Mighty! I hope that I can continue to contribute to such a wonderful community of special needs parents, as I've already met several other parents who could relate to what I had written.
You can click on the link below to go right to their page! Wonderful site with everything alphabetically organized by diagnoses/illness.
Last Night, Abram and I were on Channel 13 News again to share my thoughts on the DEA deciding to not reschedule marijuana and why it is so important for the members of the Iowa House to do what is right and pass a comprehensive medical cannabis bill.
The text of the story from Channel 13 News is copied/pasted below:
"DALLAS CENTER, Iowa -- The Drug Enforcement Administration announced Thursday that it will keep marijuana illegal under federal law for any purpose. In reaching its conclusion, the DEA said a Health and Human Services evaluation shows marijuana has no "currently accepted medical use."
That's bad news for Erin Miller, whose four year-old son relies on cannabis oil to prevent seizures. "To say that it has no medical proof that it works, my son`s 14 month seizure free today, so that`s huge to me. He`s living proof that it works," said Miller. Doctors told Miller to use cannabis oil as medicine to treat her son Abram's seizure disorder, and it worked.
"I don`t understand why the DEA has any say in what classification marijuana should be in. To me, it seems like that`s a conflict of interest. Their job is to enforce drugs, so if they reschedule that, then there goes a huge chunk of their money," said Miller. The announcement by DEA that marijuana will remain a schedule 1 substance under the Controlled Substances Act, and thus illegal under federal law, means Miller will have to continue to act in defiance of the law to get medicine for her son.
"We just went to Colorado, and the thing is, that a lot of our lawmakers don’t understand too is, you know, they have recreational marijuana and they have medical cannabis there. I can` t walk into a medical dispensary there and get his oil. I also have to break (the) law in Colorado and ask somebody to help my son, so not only am I breaking the law, I have to ask somebody else to risk their freedom to give my son his medicine and then worry about bringing it through Nebraska," said Miller.
Miller says the decision by DEA just shows how important it is for lawmakers to take action. "Our lawmakers are literally encouraging us to break federal and multiple state laws to get our kids medicine," said Miller. State Senator Steven Sodders has been on the forefront of this issue in the legislature, and wants to continue to work to try to change the law on this subject in Iowa. "I actually have a couple of constituents in my area that are using the cannabis oil, so I`ve seen it work first hand," said Sodders. "I think that Iowa will probably take another look at the bill that we tried to pass the last couple of years, that got stopped in the House, but I think we`ll try it again in the Senate," said Sodders."
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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