EAU & H4CE Announce Federal Bill and Epilepsy Celebration

For Immediate Release

Epilepsy Association of Utah & Hope 4 Children With Epilepsy

Announce Introduction of Federal “Charlotte’s Web Medical Access Act of 2015” &

Celebration of “Paint the State Purple” for Epilepsy Awareness

SALT LAKE CITY, Utah – Wednesday, March 25, 2015

The Epilepsy Association of Utah and Hope 4 Children With Epilepsy have joined thousands of families across the nation advocating for federal access to therapeutic hemp oil. A non-profit organization, Coalition for Access Now, has been formed to streamline the bi-partisan legislative efforts, and representatives of the group joined lawmakers at a press event in Washington DC today at 2:00pm (EST) to introduce the “Charlotte’s Web Medical Access Act of 2015”.

The bill proposes to amend the Controlled Substances Act to exclude therapeutic hemp and cannabidiol (CBD) from the definition of marijuana, granting those suffering access to treatment according to the laws of their own states. Therapeutic hemp is defined as cannabis with THC content below 0.3%.

Although HB105 "Charlee's Law" was passed in the Utah legislature last year, the law remains in opposition to ambiguous federal legislation, meaning families are breaking federal law when treating their children with high-CBD hemp oil. They are open to prosecution by the federal government. Producers are also at risk since the oil cannot legally be shipped or transported into Utah without violating federal law. Removing non-psychotropic high-CBD hemp oil from the same category as marijuana would remove barriers and allow for increase in supply, reduction in cost, and improvement in quality and testing. It would give every family in the nation legal access to the treatment. In addition, the current restrictions on research would be lifted so researchers can be free to study the impact of the treatment on various conditions.

We plead with federal legislators to support and/or co-sponsor “Charlotte’s Web Medical Access Act of 2015”. Likewise, we urge our state legislators, as well as all citizens of Utah and the United States, to let their voices be heard in support of those suffering with intractable epilepsy in our country.

Information regarding “Charlotte’s Web Medical Access Act of 2015” can be found at www.coalitionforaccessnow.org. Utah families participating in the federal effort invite you to join them at Thursday’s “Paint the State Purple” event on the steps of our state capitol building in celebration of International Epilepsy Awareness Day!

“Paint the State Purple” will be happening at the capitol on Thursday evening, 6:30-8:30. The event will include live music, bubble party, coloring for kids, information tables, and 3eQ recording sessions. 3eQ is the Epilepsy Association of Utah’s new awareness campaign inviting individuals to record themselves answering three key questions about their experience with epilepsy and then submit their videos to the EAU for posting online. Videos can be viewed at www.epilepsyutah.blogspot.com. Board members of the Association will be at “Paint the State Purple” prepared to create these videos upon request.

In addition to the day’s events, the Epilepsy Association of Utah (EAU) is encouraging Utahns throughout the state to rally support for those with seizure disorders by wearing or displaying purple and posting their pictures on social media. Jennifer May, co-founder of Hope 4 Children With Epilepsy, is excited about the awareness and advocacy being brought to those suffering with epilepsy. “Across the country, families and individuals impacted by epilepsy are pulling together to strengthen each other, educate their communities, and make changes in law that will allow groundbreaking new therapies to move forward and improve lives.”

#####

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. One in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the fourth most common neurological disorder in the US after migraine, stroke, and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.  Visit http://epilepsyut.org for additional information.

ABOUT HOPE 4 CHILDREN WITH EPILEPSY

We are parents of children with severe forms of epilepsy. Most have multiple types of seizures every day, varying in intensity and length from seconds to hours. The seizures take a toll on the children’s overall health, ability to function, and quality of life. These children also have 10-times increased risk for sudden death. We desperately need new treatment options that hold hope for controlling the seizures, stopping the deterioration, and improving quality of life for our kids. We have been lobbying to make high-CBD/low-THC cannabis extract available in Utah to those who suffer with intractable epilepsy. The extract is NOT smoked and it CANNOT get anyone ‘high’, but it CAN save the lives of our children. Visit www.hope4childrenwithepilepsy.com for additional information.

Press Contact: Candi Huff, Epilepsy Association of Utah

Phone:                  801-557-0326

Email:                   candi@epilepsyut.org

Website:               www.epilepsyut.org

Press Contact:  Jennifer Hardy-May, Hope 4 Children With Epilepsy

Phone:                   801-400-0046

Email:                   lovingthemayhem@gmail.com

Website:               www.hope4childrenwithepilepsy.com

Epilepsy Association of Utah & Hope 4 Children With Epilepsy - Federal Call to Action

For Immediate Release 

Epilepsy Association of Utah & Hope 4 Children With Epilepsy

Federal Call to Action

SALT LAKE CITY, Utah – Tuesday, August 26, 2014

One year ago today, the Epilepsy Association of Utah became the first epilepsy organization in the United States to take a stance in support of expanding treatment options to include high-CBD/low-THC cannabis extracts. Since that time, dozens of organizations have followed suit, leading to the passage of HB105 “Charlee’s Law” in Utah and similar bills across the nation.

The Epilepsy Association of Utah and Hope 4 Children with Epilepsy have withheld public support of federal legislation until today. We have now chosen to openly support federal bill H.R. 5226: Charlotte’s Web Medical Hemp Act of 2014, sponsored by Rep. Scott Perry (R - PA), and will work toward its passage. The bill proposes to exclude industrial hemp and cannabidiol (CBD) from the definition of marijuana, granting those suffering with epilepsy access to the treatment according to the laws of their own states. Industrial hemp is defined as cannabis with THC content below .3%.

“A federal change in policy regarding cannabis is essential,’ said Annette Maughan, President and CEO of the Epilepsy Association of Utah, “My son can be treated with cannabis openly in Utah, but he can’t go to Disneyland with his family? All because his oil is grown in the United States? The incongruity of that is staggering.”

We welcome the addition of other federal bills regarding the rescheduling of cannabis and reserve the right to evaluate each on the merits of its potential impact. The federal stance that cannabis holds no medicinal value places it on Schedule 1 of the DEA’s list of controlled substances:

“Schedule I drugs, substances, or chemicals are defined as drugs with no currently accepted medical use and a high potential for abuse. “

With the published reports of success in treating epilepsy, among other conditions (http://hope4childrenwithepilepsy.com/research-links/), the claim of “no medical use” is no longer valid; therefore, cannabis should be rescheduled. Because cannabis is currently listed on Schedule 1, research and compassionate use are very difficult to accomplish, even with the involvement of medical specialists and research institutions. This needs to change.

We call upon all federal legislators to join us in this very critical and urgent cause by supporting and/or co-sponsoring H.R. 5226: Charlotte’s Web Medical Hemp Act of 2014. Likewise, we urge our state legislators, as well as all citizens of Utah and the United States, to let their voices be heard in support of those suffering with intractable epilepsy in our country.

The language for H.R. 5226: Charlotte’s Web Medical Hemp Act of 2014 can be found at https://www.govtrack.us/congress/bills/113/hr5226/text.

#####

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded in 1973, the Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with epilepsy and seizure disorders. One in 26 people will develop epilepsy at some time in their lives, leading to over 100,000 people with epilepsy in Utah alone. Epilepsy is the fourth most common neurological disorder in the US, after migraine, stroke, and Alzheimer’s disease. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.

ABOUT HOPE 4 CHILDREN WITH EPILEPSY

We are parents of children with severe forms of epilepsy. The seizures take a toll on our children’s overall health, ability to function, and quality of life, leaving them with increased risk for sudden death. We desperately need new treatment options. We lobby to make high-CBD/low-THC cannabis extract available in Utah, and across the United States, to those who suffer with intractable epilepsy. The extract is not smoked and does not cause a “high”, but it can save the lives of children.

Press Contact: Jennifer May

Phone:                    801-400-0046

Email:                      jennifer.h.may@gmail.com

Website:               www.epilepsyut.org

Website:               www.hope4childrenwithepilepsy.com

Laps For Lyndsay

FOR IMMEDIATE RELEASE

Laps for Lyndsay

Annual walk in memory of Lyndsay Lynch announced.

SALT LAKE CITY, Tuesday, October 1, 2013- On August 31, 2010, seven-year-old Lyndsay Lynch had her last seizure.  It was that seizure that cost the vivacious and bright-eyed Lyndsay her life.

“That year, and every year since, her family, friends, neighbors and even strangers, have walked around the track at Weber State University to keep her memory alive’, said Annette Maughan, President of the Epilepsy Association of Utah, “ And each year, the EAU is there to pay tribute to Lyndsay and her family. Their loss and their dedication is felt deeply at the EAU and we can not thank them enough for all that they do.”

All proceeds from the walk are used to send children with epilepsy to The Association’s Camp Neuro Revolution. This year is especially bitter sweet since Lyndsay would have turned 10 and been eligible to attend camp for the very first time. 

The camp is geared for pre-teens and teens, ages 10 -18 with epilepsy.

Held at the National Ability Center in Park City, the Lynches generous donation in Lyndsay’s name last year enabled almost 25 children to participate in what they never thought possible: Summer Camp!

Please join us at the 2013 Laps For Lyndsay!

When:     Saturday, October 12^th 2013

Where:   Weber State University Stewart Stadium

Time:       8:00 am – 12:00 pm

Sign up at http://www.lapsforlyndsay.blogspot.com/

View Larger Map

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4^th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.  Visit http://epilepsyut.org for additional information.

Press Contact:        Lindsey Palmer

Email:                        lindsey@epilepsyut.org

Website:                  www.epilepsyut.or 

Rare Disease Story: Jeremiah

Lennox Gastaut Syndrome

Jeremiah was born healthy, except for a bit of jaundice that cleared up with bili lights after a week. He had the normal childhood illnesses and was on track with his milestones. At age 2 1/2, he was finally big enough to move from a crib to a toddler bed. On Sunday, August 24 2008, my then 15 year old son went to put Jeremiah to bed. He was laying down with him, trying to get him to sleep when he said that Jeremiah dropped his bottle so he picked it up. It was then that Jeremiah started shaking so he thought that Jeremiah was cold and he pulled the blanket up. But Jeremiah wouldnt stop shaking and he started making noises. He turned the light on and noticed that Jeremiah was having a seizure. Alex came running into my room and said: "Jeremiah is having a seizure!" I said,  "How do you know its a seizure?" and told my husband I would go check on him to find out what was going on. I saw Jeremiah in a full blown tonic/clonic seizure. I yelled for my husband and, after he came running in, I called 911. That was Jeremiah's first of MANY seizures to come. 

3 weeks later, on a Sunday night, he had another seizure at bedtime. At that point, we took him to a neurologist at Primary Children's Medical Center. They got him in for an EEG and when we got home, he had his first day time seizure. He was standing up in the dining room about to get lunch, dropped to the floor and had a seizure. 

After 3 months of sporadic seizures, they admitted him to the hospital for an over night eeg. It was early December. They had enough information after an hour but decided to keep him hooked up and finish the 24 hour eeg. We found out that he was even seizing while carrying on a conversation with the doctor! After that EEG, Jeremiah was diagnosed with Lennox Gastaut Syndrome. 

Jeremiah then took a turn for the worst: he was in the hospital in Status Epilepticus every month for a week or more, sometimes twice a month, for an entire year. 

In February of 2009 he was started on IVIg. In March 2009 he had the VNS placed. We were to the point that he was on 6 oral meds plus IVIg. He was like a zombie. He stopped talking, went back in diapers and 100% bottle fed. While in Status, he was having over 300 seizures per day, and over 100 when not in Status. My parents started the plot search and the doctors didn't think he was going to live. The prognosis was not good. No one ever thought he would get potty trained, talk or even learn. We were told to expect him to be a toddler his whole life. He stopped growing and putting on weight. 

Today, Jeremiah is a healthy 7 year old. He is in first grade and doing well! He goes in every 2 weeks for his IVIg infusion and is on 2 oral meds. He is also taking an experimental medication. He was potty trained 2 weeks before kindergarten and off the bottle in January 2012. He is talking and learning, but in a functional skills class due to his being behind. He is a 2 year old mentally. He talks like a 2 year old, and it is hard to understand him at times. But, he defied the odds and he is thriving! He is down to about 20-30 seizures per month. We see the light at the end of the tunnel now, where a few years ago, we didn't. 

LGS no longer defines who Jeremiah is.

Rare Disease Story: Sophia

Angelman Syndrome

This little love is eight-year-old Sophia. She loves animals, playing in water and making new friends and she has Angelman Syndrome. Angleman Syndrome (AS) is a neuro-genetic disorder that occurs in one in 15,000 live births and is characterized by developmental delays including difficulty speaking, seizure disorders, and symptoms of autism, cerebral palsy and even more. However, individuals with Angelman Syndrome are often full of smiles and laughter, leading to the term: “Happy Puppet” and Sophia is no exception. Please support and celebrate Sophia and all those who are affected by rare diseases this Thursday, February 28, for Rare Disease Day. For more information on Angelman Syndrome, please visit www.angelman.org.

Rare Disease Story: Isaac

Dravet Syndrome

Isaac Sintz was born on August 5, 2006.  He was born a healthy child with no complications.  

At the age of 6 months he had a febrile seizure after immunizations.  Again at 9 months and 12 months Isaac had febrile seizures with immunizations.  At that point we stopped immunizations and we were told that he would outgrow the seizures.  He did stop having seizures.  He was in preschool reading and writing and doing very well.  He was even advanced for his age.  He had developed and progressed completely normal, until he was 3 1/2 years old.  

In December of 2009 Isaac had a non-febrile seizure at a birthday party.  It was a tonic-clonic seizure that seemed to last for hours, but in reality was maybe 4 minutes.  We have no idea why he would have a seizure completely out of the blue after all of these years.  After going to the emergency room, they told us his EEG was normal and he would still outgrow the seizures.  Exactly two weeks later he had another seizure.  After another trip to the emergency room, they then diagnosed him with epilepsy.  This was heartbreaking.  Why was my son, that was otherwise so healthy, having seizures?  

He began having seizures every day.  All of the seizures being tonic-clonic.  He was seizing and sleeping and never coming out of it.  He was put on a medication that didn't help his seizures, but started to cause horrible fits of rage, crying, and horrible body pain.  Two weeks of that and we stopped that medication.  We continued doctors orders, trusting that they would be able to help my son and stop the seizures.  

Once again, the medication did not help control seizures at all, but caused horrible side effects.  

During the next couple months his seizures picked up pace at full speed.  He would seize every hour and then sleep, seize and sleep non-stop.  He wasn't waking up to eat or take meds.  We were shoving meds down his throat to get him to take them.  We had to syringe fluid in to his mouth to keep him hydrated.  We were in the hospital for two weeks, out for one, in for three weeks, out for one, etc. for three months.  The doctors had no idea what was wrong with him.  They would get him stabilized and send us home.  The minute we were home, the nasty cycle would start all over again.  The rescue meds stopped working because we were using them so frequently.  Even when he was awake it was like he wasn't alive.  He wasn't able to talk or communicate to us.  We were carrying him around because he couldn't walk.  He was back in a diaper.  

At one point, after being in the hospital on and off for months, they told us he would never walk or talk again.  Once again our hearts were shattered.  But there were no answers as to what was wrong with him.  Why was he having all these seizures and losing all of his abilities???  Finally they did some genetic testing while he was in the hospital.  We then got a call to tell us that he had Dravet syndrome.  

I had never heard of Dravet syndrome.  I immediately started researching this disease.  It was worse than anything I could have ever imagined.  The information I found told me that my son was going to have intractable epilepsy for the rest of his life despite medication.  That there was a high fatality rate and that he would not live in to adulthood.  That he would be mentally and physically disabled.  That my once healthy normal child would never be the same again.  We went through the grieving process.  We had lost the child that we once new. It felt like our world had been completely shattered, fearing the unknown and the unexpected.   

We love our Isaac more than words could ever express.  Our Isaac is just a new Isaac.  We have a new normal.  Our life has completely changed.  Because of Isaac's seizure threshold we are not able to live as we used to.  

Isaac now has failure to thrive and is fed through a g-tube.  He doesn't regulate body temperature and has seizures when he overheats.  He has ataxia and falls and hurts himself very easily, etc. We have to be very prepared every time we leave the house for any kind of emergency.  We can't do a lot of the things we used to do because Isaac can't mentally or physically handle the strain and commotion.  But, through these challenges, our family has grown closer together.  We don't take anything or anyone for granted.  We appreciate each other more fully and respect each other for all that we have to sacrifice for each other.  We are loving each other through new and improved eyes.  This has changed us all for the better.  We have learned valuable life lessons and met incredible people dealing with similar things that we would have not met under any other circumstances.  We are so blessed.  

Isaac is doing much better now.  After meeting with doctors who specialize in his disease, we have been able to get him the treatment he needs.  Isaac is walking, talking, riding his bike, and going to special needs school.  We have also learned that there is more hope for Isaac with the more recent research on the outcome of the disease.  We have hope.  He may never learn to read or write, but he is still our little ball of fire that we are able to put our arms around and hug every single day.  To see his smile, makes it all worth it.  He is our Isaac and we love him more than anything in this world.

- April Sintz

Rare Disease Story: Isabelle

Rett Syndrome

This is Isabelle. She is 8 years old and has Rett Syndrome. Rett Syndrome is a rare genetic condition that affects almost exclusively girls and includes symptoms of Autism, Epilepsy, Parkinson's syndrome, Cerebral Palsy and anxiety.

Isabelle “Izzie” Knowlton came into the world on October 29, 2004 to join her siblings, Emily and Tom. She was small at birth and the nurse exclaimed “What a little peanut!”.  Peanut has stuck ever since. After 6 days of life, Izzie gave us quite the scare; she was blue in her crib. We know now that was her first seizure. After a week in the hospital with lots of tests, she went home with a heart lung monitor and oxygen.

Most girls with Rett Syndrome progress normally and between 9-18 months they regress much like an Autistic child. However, they continue to lose skills and develop symptoms of Cerebral Palsy. Isabelle is A Typical in that she never had developed milestones. At 8 months, she was not rolling over or sitting up. At that point, we decided to take action. We were huge fans of the movie “Mr. Holland’s Opus” and became convinced she could not hear. It took 16 audiologists before we were convinced there was nothing wrong with her hearing. We moved on to a behavioral developmental specialist who gave us a clinical diagnosis of Angelman’s Syndrome.   A few months later, she scared us with her first recognizable seizure:  A grand mal.  Back off to the hospital for another long stay. After 2 years of testing, and little developmental progress, we learned she has Rett Syndrome.

In the time since then, Izzie has lost the ability to swallow foods on her own, and the muscle tone to chew anything. She was placed on a feeding tube, which is common in Rett, and has been doing very well with it. She is wheelchair bound and is learning to use her eyes to communicate with a computer. We have found that she has a wonderful sense of humor and a strong will. Izzie is very smart girl who loves flirting with her sister's boyfriend, baby dolls and the color pink.  Everyday we see more of her personality coming out. She loves music and dancing, Dora the Explorer, and puppets.

Isabelle is a trooper; she was featured in a television segment in Canada as a spokesperson for Rett Syndrome (and got to go swimming with the dolphins for the shoot!). This Thursday is Rare Disease Day and we celebrate all those diagnosed and those yet to be. For more information on Rett Syndrome, please visit www.rettsyndrome.org.