And we have a winner...( we are fighters, we are warriors, aren’t we?) By far the best, the most honest, the overall winner is:
NF2: There is no cure, but there are treatments that can help us now, things very few doctors are aware of. So go to nf2is.org
NF2 is the Lock, Education is the Key
Today is DAY FOUR of GERD Awareness Week! Do you know the most common symptoms of GERD? Some GERD symptoms are the same for esophageal cancer:
Symptoms of GERD:
-Sensation of a lump in the throat
Symptoms of esophageal cancer:
-Food getting stuck
-Hoarseness or chronic cough
-Pain behind breastbone or pain in back
For more information, please visit: ➡️SALGI.org/GERD
This post is for informational purposes only and is not medical advice nor intended to be a substitute for professional medical advice, diagnosis, or treatment. Seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Hello all! Sorry to have been away so long. Here is a #WIP that I will be selling soon. More details to come!
It has been a tough transition back into "Normalcy". This holiday season, the baby of the family won't be with us & All we can really do is stay strong & support one another.
With that being said, We have decided to honor our darling Mia by donating 60% of the proceeds raised on Small Business Saturday, 11/24/18, to the American SIDS institute.
For more information or to donate directly, please visit:
I will post more photos of the items created by my Daughters, Niece, and myself so that you have an idea of what we plan to sell Saturday.
Calling All Dancers!
Long Time Friend Frank Gatson and Jason Seto Collaborate on Dance2Cure to Support amfAR.
Creative Director: Frank Gatson
Host: Montana Tucker
Jason Samuels Smith
Special Guest Performances.
On Saturday December 1st, 2018, #amfAR will host a kickoff to our #Dance2Cure dance challenge.
Join us in Hollywood, where we’ll make history in the fight against #AIDS .
1737 Vine Street
@frankgatson @humanito_jason @1triciamiranda @jaquelknight @chrisgranted @ jsamsmith @montanatucker @amfar
In advance of the 2019 Dance2Cure main event, amfAR will hold a nationwide contest led by legendary choreographer, @frankgatson. The contest will engage thousands of aspiring dancers (18 and up) from across the country to help raise money for amfAR’s #HIV Cure research. Dancers will have a once-in-a-lifetime opportunity to work with the country’s hottest choreographers. Ultimately, dance crews will battle it out on stage in front of a panel of celebrity judges and over 1,000 guests.
Exactly one year ago today, I was diagnosed with Lupus. Happy Anniversary! Yes, I have decided to celebrate it. Not because I believe this is a super exciting thing to celebrate - I mean come on, “I’d like to be diagnosed with a chronic illness.” - said no one ever. But I HAVE decided to celebrate the fact that one year later, I am still standing, much stronger than I’d anticipated, with a fire in my belly and determined to live, not just exist but to thrive. So, cheers to one year of thriving with Lupus!
To commemorate one-year-down, I’ve posted TEN things I’ve learned so far on this journey… Up on the blog (link in bio) 🌺🌸🌺
📸 from @lupusorg
If you read one solid post of mine, read this:
I want to do my best to spread awareness for two different matters... Endometriosis and medical marijuana.
First of all, there is no cure for the painful pelvic disease known as endometriosis. Chances are you know a woman in your close circle that has it, and she may not even know it because as women we are brought up to deal with the pains that come with your cycle. (If you don’t know one, you do now. Me.) What some women don’t know is that those pains should not incapacitate you for your entire day while on your cycle. This is endo, a debilitating disease that doubles a woman over at a moments notice. At work, at home, at school, at practice, grocery shopping... need I go on?
Secondly, medical marijuana has helped me greatly through this. Living in a legal state has brought different possibilities when it comes to self care and self awareness for my well being. However, I traveled outside of my state with my prescription “drug” and was sentenced to 3 years probation and a permanent stain on my record.
Now to the point, my gofundme page is not only for myself, but for all women with endometriosis. Yes I have a specialist I am waiting to see in #Atlanta @centerforendocare, but it comes at a monetary cost. If you can help, I will send you a hand crocheted #beanie and a personal thank you note (but you must leave a private comment with your address). At this point I’m tired of bribing a hat for $50 or more donations. My gofundme is about to return the only donation I have bc of the lack of support. Therefore, donate, leave your address, get a hat. That simple. Link in bio.
Feel free to share this post. I’m actually hoping you will.
While I spent the first year of my diagnosis in a pretty dark place - I’ve been working hard on getting use to and navigating my “new normal”. I have my good days, my bad days and days where I just numb out because it’s easiest. But one of my main goals is to NOT LET MS DEFINE ME! I am more than my MS. It’s just a new part of who I am. So even when my silly MS gets in the way, I still find ways to see it or make it positive. Cog-fog is something I’m sure most of my MS Warriors can understand and relate to. It’s very frustrating when your brain plays tricks on you. More often than not it will deeply upset me. But then there are the times where it actually makes me laugh and laugh hard. My grandpa Mike passed away years ago, but he was my best friend. He was creative and silly like me and we played and went on all kinds of adventures. He use to sing this silly song to me which randomly popped into my head the other day and so I started singing it to my little fur baby. (By the way, my little pup is the best therapy in the world for me and my MS) Anyway, the song was - Froggy Went a Courtin’ - and one of the lyrics is “Froggy went a courtin’ and he did ride, sword and pistol by his side.” I was just so happy my brain remembered this song and memory so I start belting it out to my little furry dude...except my lovely MS brain changed the lyrics to “Froggy went a courtin’ and he did ride, FORK AND PICKLE BY HIS SIDE.” The second it came out of my mouth, my brain registered what I just said and I completely lost it. For once I was in tears - not from sadness - but from laughing so hard. It may not seem like a big deal, but sometimes for some of us with MS, it’s little things that we need to cherish and laugh at to keep us going. For that moment I was genuinely happy and genuinely laughing at something so silly and I loved it.
Day 748 for #20tocrushcancer , in support of those who are battling #cancer (in any form), or who have survived it. This one hits close to home for me, as some of the people in my life deal with both the daily challenges and the medical procedures in order to get through their day. Helping to raise #awareness is one way to show that I'm looking out for you.
Take time to let those people in your life who deal with the challenges and treatments of this illness know that they are loved and appreciated. It could make all the difference in their day, and help give them the courage to work through their challenges. #letscheckonafriend
If you are seeing this post, know that you are a awesome and amazing person. And yes, you matter to me.
•Problems can occur if the thyroid overproduces hormones, when it is known as hyperthyroidism, or underproduces hormones, which is called hypothyroidism. These issues may also result in the growth of the thyroid, which is called a goiter.• please click the link in our bio for more info! 🙌🏼
One of our beautiful jlovers has transitioned to heaven. Please hold her friends and family in your prayers. I didn't know her personally, but from what I understand she loved dancing and @jlo with all of her heart. Keep living, keep loving, keep dancing sweet angel! Tell someone you love them today. Jlovers, please tag Jennifer so that we can all share in celebration of a fellow jlovers life! ❤❤❤ #findacure#cancer#allihave#allihavefinal15#vegas#jlovers#jenniferlopez
Hey Insta world! I'm hoping you'll click the link below and vote for BayCare Clinic for the 2018 Broadway District Window Decorating Contest! A handful of wonderful ladies and myself took time out of our busy lives to decorate the "BayCare Tree Farm" with the theme 'Our Christmas Wish is for Cures, Love and Hope.' in the front entry way into our Corporate office on Broadway!
You can vote once a day so please come back more than once and vote for us!
#tkeregram @jakesttts well said. 💯
Had a great time visiting St. Jude hospital with the rest of the boys prior to initiation. One of the main reasons I chose TKE was because their philanthropy is St. Jude's, an organization I'd be happy to not just donate to but to raise money for.
Visit the hospital if you have the chance and donate if at all possible, if not money then some time; every bit of support brings researchers one step closer to finding a cure.
👨👩👧Life can change in an absolute instant and that’s just what happened with these families and could one day happen to any one of us. 💰96% of federal funding for research goes towards all adult diagnosed cancers, leaving a small percentage left towards childhood cancers. 📚Research has made big strides over the years benefitting these children and their families. They deserve to live their life with a little less pain, more support, advanced treatment and hopefully one day, a cure! 🎙Today is the annual Bob’s Buddies Radiothon from 6a-6p. This organization raises money for Pediatric Brain Tumor research. 100% of all donations go directly to the Pediatric Brain Tumor Foundation. 👊🏻Please join me in helping kids fight this terrible sickness. No amount is too small and does not go unnoticed. 📱💻Call 1-866-975-CURE or go to: www.bobsbuddies.com to donate today! .
Call in and make a donation today and tune in on their radiothon today @g105radio They raise money for pediatric brain tumor research and 100% is donated for the research. Also take a moment to say a prayer for the parents who have lost a child and who are still fighting this battle. #morethan4#childhoodcancer#donate#today#love#help#findacure#cure
My darling Liz...
A year without you..
A year of a million tears and heartache from the daily reminders.. A year we learn acceptance and what is important becomes clearer
A year your daughter Ivy turned one and her day was filled with so much love as you would have dreamed.
A year your 30th was celebrated large!
A year that we all continued to LIVE because you didn’t get to finish
We love you. And I Miss you so fucking much.
Here is a little snippet of all the memories shared to Liz’s timeline over the year.
Thinking of you all and sending love. 💛✨💫
This is sad but true.
I had one Lyme expert tell me recently, “Sadly, Chronic Lyme is a Rich Person’s disease.” Meaning bc insurance companies won’t pay for the treatments needed, only the wealthy can afford the treatment to be symptom free.
Pray the CDC changes their policy on chronic Lyme so insurance companies will pay for the treatment.
28 years! Not a day goes by that you are not missed. I’m sad you never met your grandchildren, that when I’m having a tough day I can’t just pick up the phone and call you, and that we will never have a mother-daughter trip to the beach. All I’ve ever known is life without a mom, but I rejoice that I have SIX of my own that I get to be a mom to and pray they never experience the heartbreak my sisters and I endured. #forevermissed
☀️ An INCREDIBLE day! ☀️ A second major research hurdle was crossed last week. We received this email from The Jackson Laboratory: “[We] just got word today that the microinjection for the Camsap1 KO project has successfully produced 45 pups born on 11.3.18. These animals will be weaned and sampled at 3 weeks of age, and then the DNA sequence will be analyzed to identify potential founders mice. I hope this is good news for you!” So...what does this mean? 🐭🐭🐭 First, THIS IS ABSOLUTELY GREAT NEWS!!! The irony? This first generation of mice (called N0) were all born on 11.3.2018, which happens to be Lauren and I’s wedding anniversary!
Simply, the 45 first generation mice will be screened at 3 weeks old to identify the ones that are carriers of CAMSAP1 but unaffected like Lauren and I. Then, the lab will breed those mice. Approximately 25% of their offspring (the second generation, or N1) should have Landon’s exact CAMSAP1 mutation. These N1 mice with Landon’s mutation will be the ones that come to St. Louis to undergo gene therapy/rescue by Dr. Curiel.
Scientifically, to simplify (as much as possible), 45 mice were born following a procedure whereby a microscopic needle was inserted into a developing mouse zygote following initial fertilization. The needle was used to inject the developing cell with the necessary genetic CRISPR/CAS9 enzyme (think of it like a scissors) and guide arm (to guide the scissors to the exact gene) to knockout (KO) or remove the CAMSAP1 gene at the site of Landon’s mutation.
Lastly, enjoy a few pictures of recent weeks’ activities! #CAMSAP1#landonsleague#epilepsy#ourjourneytoacure#findacure#research#mousemodel#supportresearch#neverlosehope#epilepsywarrior#lissencephaly#smoothbrain#thejacksonlaboratory#specialneedsparents#specialneedsfamily
I’m a mess this morning, a friend of mines sister lost that battle to epilepsy 😰 ...as Elias fights this battle of seizures every night it breaks my heart 💔 one of my worst fears.... please keep not only Elias in your prayers but my friend and her family needs them too 😔 #fepilepsy#findacure#nationalepilepsyawarenessmonth 💜
I wasn’t going to share this but felt compelled to since it’s Diabetes Awareness Month... Last night Gage was reading a book about a boy who played baseball who got diagnosed with Type 1 Diabetes. He was reading and only made it to page 3 when a wave of emotion came over him. Randy held him with such grip and love and just let him get it all out. It has been a while since he’s broke down but the story obviously hit home. I don’t know what he was feeling cause he wouldn’t say but we left him to his thoughts and let him cry it out holding him and just telling him we love him. This morning Randy and I both said we truly thankful for insulin & health insurance so we can have our boy here even when he has moments like this. No matter the day, no matter the year...his life will be consumed by this disease until they find a cure. But until then, we will hold him, comfort him, support him and fight for him the rest of our days. We will push thru! #diabetesawarenessmonth#diabetessucks#bowenstrong#findacure#type1warrior#type1diabetes#diabetesproblems#diabeteslife