Tag Archives: New Jersey

Traveling to the Novartis Blogging Conference for TSC

I haven’t blogged much over the last year, except to rage over my pet political issue, so imagine my surprise when I was invited to the Novartis Blogging Summit for TSC.

*Insert legal disclaimer here–While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.* They also gave me a box of kittens. No. I’m kidding. Only one lousy kitten.

Four other moms to kids with TSC were also there.

Tina of Captain Jacktastic, who I initially met around the time I started this blog through WordPress and later Facebook.

Heather who has written several pieces for Huffington Post, and I met for the first time last year in DC during the TS Alliance’s March on the Hill to continue funding for the Tuberous Sclerosis Complex Research Project.

Laurisa of Land of La, who was one of my early stalking victims when I was finally able to do TSC research for more than two minutes at a time without “breathing” into a paper bag.
IMG_8972 And Stephanie of Lanier Landing, who was the only one I had really never had any social media contact with, but I had stumbled across her blog when seeking other TSC kids in Epidiolex trials. At the time, her son was the only one I knew of.

The day I left, Connor seemed to have a bit of cold and Chris thought he was coming down with it as well. This is called foreshadowing — but I’ll get into that later.

I was picked up at the Newark airport by a man holding a sign with my name. I am accustomed to such a lifestyle as I force my husband to stand in the driveway most days and greet me in this manner when I come home. It turned out Laurisa had shared my turbulent flight that wasn’t quite in a “luggage bins popping open” category, but definitely required gripping of the arm rests and the parents in front of me to intervene with their 10-year-old who was launching a panic. The driver whisked us to the Short Hills, New Jersey Hilton where I luxuriated briefly in the softest king bed ever then headed down to the hotel bar to meet the other ladies.

We had dinner with several Novartis employees and shared our stories so they could have insight on what it’s like to live day-to-day with TSC. For those that don’t know, Novartis produces Afinitor, a medication that can shrink certain types of tumors that occur in TSC. Connor, fortunately, does not have a need for this medication at this time, but it would be a likely course of treatment should he ever develop a SEGA in the brain or large AMLs in the kidneys.

It’s weird to sit and talk about your kid and TSC without having to give a bunch of background information, explaining what certain acronyms mean or why a particular medication might be preferable to another. They already know and they’ve already been there.

When dinner wrapped up at 8, we caught the train into NYC to meet another TSC mom who lives in the city.

Correction, four of us went. Tina’s no fool. She wasn’t about to let a king bed, personal hotel room and a long, luxurious shower without the door cracked listening for shenanigans pass her by.

We met fellow TSC mommy Naomi at Haymaker Bar, a few blocks from Grand Central Terminal, ordered drinks and appetizers and talked about some more acronyms that needed no defining.

IMG_8778

Heather revealed that Times Square was on her bucket list and since I was pretty much intent on spending every minute I could squeeze out of this 24-hour trip in NYC, I was fully supportive of her checking that item off. We trekked through the tourist mecca, which was hopping on this Friday night. As we passed by the Disney store, we were drawn inside by the sheer number of people inside at midnight. Apparently a large number of tourists venture all the way to New York and decide, as one day rolls into the next, that they simply MUST HAVE AN ELSA DOLL RIGHT NOW. It was amazing. And a little sad. But mostly amazing.

IMG_8816

This slideshow requires JavaScript.

We caught the train back to Short Hills where we bonded further as we almost spent the night in the station. The hotel didn’t offer much hope of a taxi and their shuttle service had stopped. Our first Uber driver was too stupid to find the train station. No we are not shopping at Trader Joe’s at 2 am. The second one found us, but appeared to have only been a licensed driver for a day or two. At any rate, we made it back to the hotel where it took me another hour to fall asleep, still high off neon and LED lighting (did you know that the Times Square district is the only district with a requirement for businesses to have illuminated signs and that there is a minimum, rather than maximum, lighting requirement)?

The next day was filled with discussions of TSC, diagnoses and, most importantly, what kind of resources would we have liked to have had when we received the diagnosis. We spoke of the fear of what was out there on the Internet and at least one person had been told to stick to TSAlliance.org and not to Google. Period. Novartis unveiled some new informational pamphlets for our feedback and said they are revamping their informational site.

There were some other resources they want to be sure the TSC community is aware of.

  1. The Afinitor $25 co-pay card. This only works with commercial insurance (not Medicaid). If your co-pay is more than $25, print this out and take it to the pharmacy.
  2. Afinitrac. This support program offers financial and educational support, deals with your insurance and provides other resources. Please note they are only allowed to offer it to patients who are using Afinitor on-label. If you are using it off-label (meaning for something it has not been officially FDA-approved for yet, like seizures or cognition) they are prohibited from providing this support.
  3.  Turbo & Scott. Previously the story book about a kid named Scott who has TSC was only available online, but it is now in print. It goes into a lot of detail about TSC in more kid-friendly terms. It’s a bit complex for younger kids or kids who are cognitively affected, but for older kids, siblings, or friends, it can be a great resource. There is also a comic book about a teenage Scott on a quest to meet others with TSC.

I was not required to share these resources or blog about the summit in order to attend, but I wanted to make sure people know about these resources as for many of us, the use of Afinitor (Everolimus) could very well be on the table one day, if it isn’t already.

I’m sad to say that I had to leave just before we wrapped up to catch my flight so I didn’t get to spend more time with my mommies, but perhaps my suggestion, as I exited, to do this again in Vegas will be heeded by Novartis 😉

IMG_8850

And so I headed home where I would soon learn that the cold was not a cold…but more about that in my next post. A full update on Connor to come and the reasons why I’ve dropped off the mommy blogging planet.

 

 

 

 

 

Advertisements

Hope. Encourage. Inspire. Never Give Up.

Second Annual “Blogging for TSC Awareness Month” Day 16

by guest blogger Samantha Sinclair  (Maple Shade, New Jersey)

IMG_3368

Hi, my name is Samantha. I am from Southern New Jersey and about 23 years old. I was born with Tuberous Sclerosis and have had numerous laser surgeries beginning in adolescence and continuing into adulthood. I have multiple angifibromas on my face (with redness) and a few on other parts of my body, ash leaf spots (no pigment color of my skin in that section), skin tags (until they were removed), and 5-6 AMLs (angimylopomas) in total attached to my kidneys. I also had a large surgery last year in 2013 that removed an AML from my kidney through a process of three surgeries. I first had it embolized, then the AML turned into a tumor-like sack which was drained, and then it came back again and was completely removed. This was my biggest surgery besides the numerous laser surgeries I have had. I had 1300 milliliters removed from my body with that one AML. I felt extremely lucky to have conquered this surgery and move through the recovery process to live a healthy life.

I have had one seizure since I was 3, but prescriptions have helped prevent them from occurring anymore. I  am blessed to say I have a mild case of Tuberous Sclerosis because I have not endured countless seizures or other cognitive obstacles.  In May 2013, I graduated from Georgian Court University with a Bachelor of Arts in Psychology and am currently finishing up my first year in a Master’s Program for Clinical Mental Health Counseling at Georgian Court. In addition, I am very blessed to have my fiance, Eric, who loves me no matter how easy or difficult the circumstances. We have a lovely life, been together for six years and engaged for about two years. We are excited to be getting married in June 2016.

Overall I cherish many moments of my life because I have been able to live a healthy and happy life. My life encompasses warm memories of competing in sports from high school into college, and the arts such as musicals, drama club, and playing an instrument. I have been involved and held many leadership positions in many organizations and clubs on campus during my four years with Campus Ministry, Student Government Association, and Campus Activities Board, along with assisting many organizations with different events. I also really love to do volunteer work and have currently held two walks at my university over the past few years raising funds and awareness for Tuberous Sclerosis with the help of the TS Alliance. I am a fun, outgoing, understanding, and caring person who believes in living life to the fullest. I enjoy nature and I am always interested in new experiences.

I just joined the TS Alliance Group and even though I have organized a couple walks at my university to raise funds for TSC it’s nice to be apart of a group where you can share your helpful advice and provide support to others. I love learning about people’s stories, triumphs, and overcoming the obstacles. I feel very lucky for what I have accomplished and what I continue to strive to accomplish. For a long time over the years, I felt alone with TSC because I had no connections to others with various experiences to share, connect, and provide support to each other. Although my family and friends were there I wanted to feel connected with people who could truly understand what I was and still am going through. During those walks I organized I heard incredible stories that moved my soul. I admire all those people I heard stories from that were far more difficult than mine and I continue to look up to people who deal with TS on a regular basis and see the light in their journey. There is no light once you hit the end of the tunnel, the key is to look for the light throughout your journey and turn it into a positive. I look forward to being apart of this group, learning and being there for people, and hearing your experiences. I would say having TS has made me stronger and encourages me to live a full life every day. TS pushes me to conquer everything that may seem impossible and achieve my dreams which are endless. TS does not stop us. It does not define who we are; it is only a small part of our whole person. I learned if we never give up on what we believe or want to achieve in life, great things can happen in ways that you may never have thought possible. If anyone ever wants to talk, share stories, needs advice, or support I am here to help.

People should not have to leave their homes so their children can receive medical treatment.

Photo taken from Faces of Cannabis web site.
Photo taken from Faces of Cannabis web site.

This is Hunter and he is eight years old. I met his mom, first at a music class she attended with her younger child, then I saw her again at the pool where Hunter and Connor both receive aquatic therapy. One day I realized I hadn’t seen them in quite some time, only to meet mom and dad again in a Facebook group. They had moved to Colorado to obtain treatment for Hunter after several seizure medications, VNS and the ketogenic diet failed him.

They have finally found an effective treatment in the form of medical marijuana–20 minute seizures are down to two minutes and he went six days straight seizure free for the first time in eight years –but now they can’t come home to Georgia. And they aren’t the only ones. Many families have left everything behind to move to Colorado to obtain access to medical marijuana. Charlotte’s Web is a well-known strain featured in the CNN special with Dr. Sanjay Gupta and created by Realm of Caring. It is low in THC so the kids do NOT get high, and it is in the form of an oil, so they do NOT smoke it. Sometimes people even have to leave other legal states so that they can get the form of marijuana their child needs. New Jersey is such an example. Though medical marijuana is legal, Gov. Chris Christie has made it exceptionally difficult for families to get what they need.

From the Huffington Post: “See this is what happens. Every time you sign one expansion, then the advocates will come back and ask for another one,” the governor proclaimed during a press conference from his statehouse office. “Here’s what the advocates want: they want legalization of marijuana in New Jersey. It will not happen on my watch, ever. I am done expanding the medical marijuana program under any circumstances. So we’re done.”

Remember that as he sets his sights on the Oval Office.

Georgia Governor Nathan Deal also opposes it.

These families want to come home. And I don’t want to one day face the same decision they have if we can’t get Connor’s seizures under control. If you are interested in the legalization of medical marijuana in Georgia, please check out this group.

1476206_467625740013006_1615885801_n

A 15-month-old dies of red tape.

“I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need in fighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.”  -Roger Gail Lyon to Congress in 1984, shortly before his death from AIDS.

“It’s a simple issue. Please don’t let my daughter die, Governor.” Father of Vivian who has Dravet syndrome, Brian Wilson, to Gov. Chris Christie

I recently became a member of a Facebook group about the use of pediatric cannabis, consisting of parents who are using medical marijuana to treat their children’s serious illnesses, as well as parents who are seeking to do so. As we live in Georgia, I fear we will be at the end of the list of states to make it available, but I’m wanting to keep an eye on things as you probably saw in my previous post. I simply don’t understand why people are so afraid of MMJ, but it’s okay that my son takes Onfi which carries this potential side effect.

Two members of the group have a daughter with Dravet Syndrome, a severe form of epilepsy. If you watched Dr. Sanjay Gupta’s special Weed, which featured Charlotte, the little girl in Colorado who had her life transformed by MMJ, you have seen what Dravet can do to a person. This family lives in New Jersey, a legal state, but one with some of the largest restrictions since Gov. Chris Christie shakes in fear that he is treading a slippery slope in which — gasp! — adults might get high just for fun. This family had just completed jumping through the hoops, completing paperwork and sending the $200 fee to the state last week. Her marijuana application is pending.

On November 27th Sabina Rose suffered a 25-hour seizure that caused brain damage and swelling. She died December 2.

But, hey, at least those darn adults can’t get high.

IMG_5793