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💙💙 Please Save Damian 💙💙 Brittany Markham

@pleasesavedamian

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Theme park designer ➡️ Mom on a mission
💙 Raising $3 mil for lifesaving treatment for my son thru art & BIG holiday events!
• DONATE, info, & more ⤵️

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If your child was sick and there was a real, viable treatment option, the next step seems pretty straightforward: pursue that option. But what if it wasn’t that easy? What if the treatments were experimental and access was limited? For many families whose children have Niemann-Pick disease type C (#NPC), these questions are the reality.

In a 3-part series, Patient Worthy spoke to DeAnna, Sara (@hopeformarian), and Tiffany about their experiences with NPC, increasing education and awareness, @saveourmedicine, and why the fight for medication access is so important.

Parts 1&2 are available on our website, and the final Part drops this afternoon at 4:30pm. Head to our website for more.

♥️ First photo: Save Our Medicine
❤️Second photo: Tiffany and her family, including son Jacob, who unfortunately passed away from NPC
💗 Third photo: Sara, Marian, and their family
💙 Fourth photo: DeAnna, her husband, and Osama

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#patientworthy #niemannpick #niemannpicktypec #niemannpickc #raredisease #genetics #geneticdisorder #hopeformarian #cyclodextrin #adrabetadex #wholeexomesequencing #genetictesting #raremom #parentingrare #rarediseaseawareness #rarediseases #raredisorder #geneticdisease #clinicaltrial #youaremysunshine #saveourmedicine

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Such an incredible and moving story, but they need your help. Please share this video, and donate if you are able to a more than worthy cause. 💙

#savedamian

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After receiving a life-changing diagnosis, a Newhall family is fighting to save the life of their 2-year-old toddler in race against time. @pleasesavedamian

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OUR TURN! WE DID THE #asmdbabyfoodchallenge 💙💙
Now It's Your Turn!
#ASMD
#neimanpick
#SaveDamian

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Let’s come together to save Damian💙Please tag or share with friends and family to spread awareness about Damian’s story . #pleasesavedamian #savedamian #scv #scvsignal #donations @pleasesavedamian @signalscv @whatsupscv

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We had a great time at the @fit4momsantaclarita kids 1k yesterday!! Desi was so excited to finally wear his Spider-Man “Spin” costume and even more excited to get a medal!!

Proceeds went to @pleasesavedamian which as a mama is the best gift of all! 🧡Check out their page for more info. Let’s save this sweet boy.

What fun things are you doing with your kids this week? 🕸🎃

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🫕🍜🍲💙It is Thai Food Wednesday!💙🍲🍜🫕

For the month of September!! Who wants to enjoy a delicious tasteful meal that is simply mouth watering for an Amazing cause?? Please go to Mom Can Cook Thai Kitchen mention this flyer to HELP raise funds for clinical treatments! 💙💙#SaveDamian #asmdraiseawareness #rarediseaseawareness

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❤️❤️❤️❤️MOTIVATION MONDAY❤️❤️❤️❤️

"Praise the Bridge that carried you over."-George Coleman

What is that bridge for you?

Write in the comments 👇👇👇👇

Mine is being able to be a bridge for people like #damian if I can’t donate a lot I can at least use my connections to pass the word and show awareness of this rare but deadly disease that doesn’t get much help because many people don’t know about it. Please share or pass this message on to see how far we can go to not just helping Damian but all the other little boys and girls that don’t get to make it past 5 years. #monatgratitude

https://gofund.me/24dc59ae

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#savedamian #asmdawareness #asmdbabyfoodchallenge @pleasesavedamian

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On Wednesday’s in August take a break from cooking and eat out for an amazing cause!! #SaveDamian #asmdawareness

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Dinner with Damian fundraiser! We have some wonderful raffle prizes that have been donated! So get your raffle tickets and come have a fun Family game night!

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Help Damian and all the other babies out there that literally have a death sentence the minute they are born. It’s called infant Alzheimer’s (ASMD)

If you read these blog by Damians mother brittney you will read that although we know this to be true but big pharmaceutical will not fund something if it doesn’t have the big support behind it like break cancer etc.

Although all charities big or small are important and I’m not down grading any of theM. I want to draw attention to the little guys. #donate #savedamian #littleguy

If we can all donate just $20 we can help this family and many other children’s families with this disease. Possibly help save their short lives lives. Unfortunately Without the funding they are just waiting. Time is not something this disease can stand as they are said to not live past 5 years old untreated….. Damian is 2.

❤️❤️❤️❤️❤️❤️

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