Musings of a Marfan Mom

Have a Heart Giveaway!!!

| 48 Comments

February is Have a Heart Month, to raise awareness for Marfan syndrome. 1 in 5,000 people have Marfan or a related disorder, but only about HALF of those know they have it. Since, with proper treatment, people with Marfan can live to a normal life expectancy, it’s imperative to get the word out about Marfan and its symptoms.

I’m excited to be able to host a giveaway in honor of Have a Heart Month! Larie Beck is a mother to a child with Marfan syndrome and we met several years ago via an online chat. Besides being a homeschooling mother to two and an active NMF volunteer, Larie makes beautiful jewelry!

Larie has created the Have Heart necklace specifically for this giveaway. This one of a kind necklace features 3 hammered, silver hearts dangling from a silver chain. It is accented with fire polished, red crystal beads, red glass heart and seed beads. It measures 11.5 inches from the clasp to the tip of the dangling hearts and is finished off with a magnetic clasp. (length can be shortened before shipping if the winner requests).


There are 3 ways to enter this giveaway, which is available to US residents and runs through Feb. 21st.

1) Visit Larie’s Etsy shop and comment with one other item that you love.
2) Visit the National Marfan Foundation’s website and comment with one thing you learned about Marfan.
3) Tweet about this giveaway (just once) and leave me a link to your tweet.

You MUST leave a separate comment for each entry. The giveaway ends at 11 pm PST on Sun. Feb. 21st. A winner will be selected using a random number generator. Make sure you leave a valid email address so I can contact you. The winner will have 48 hours to respond, at which point I will choose a new winner.

Also, Larie is donating a portion of the proceeds (up to 100% for some pieces!) for each heart piece sold during the month of Feb. to the NMF.

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48 Comments

  1. I really like the fun with copper earrings!

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  2. I was suprised to learn that up to 30% of people who har marfan are the first people in their family to have it.

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  3. I’ve never heard of this syndrome. I looked at the symptom checker and saw where people with Marfan have long arms and Scoliosis with a 20 degree or higher curve. I found that interesting because I have both of those things.

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  4. I like the Spring Dream Necklace from the Etsy shop. Beautiful!

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  5. I never heard Marfan before, but since 1/5000 people have it…we need to know about it. I learned that people with the disorder can have a variety of problems including tissue connectivity. I am really surprised at how many it affects.

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  6. I love the “Summer Naturals .. Peaches and Cream..Freshwater Pearl, Peach Moonstone and Copper Earrings”–so pretty!

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  7. I learned that there is no cure for Marfan syndrome, but there is a “range of treatment options can minimize and sometimes prevent complications.”

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  8. I still love her Hearts on Fire necklace and earrings.
    Larie Rocks!

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  9. And you KNOW I RT

    stefpark RT @marfmom Enter my giveaway for the 1 of a kind “Have Heart” necklace! http://bit.ly/bBO27s #MarfanAwareness Please RT

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  10. I love the Have Heart necklace (and everything else on her site!). Larie makes beautiful things and I love how she raises awareness (and funds) for Marfan syndrome and Autism.

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  11. While it is estimated that 1 in 5,000 individuals have Marfan syndrome, nearly half of those individuals don’t realize they have the disorder. This is why it’s so important to raise awareness about the characteristics of Marfan syndrome.

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  12. I love the hearts on fire earrings and her autism awareness pieces. I love that two of my favorite causes are represented in her one store!

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  13. I have read most everything on the Marfan website, but one of the most fascinating things that I have gotten from it is the information about the related disorders. I am especially interested by the note about “no specific diagnosis,” where patients continue to be monitored but do not have enough symptoms for a diagnosis, because this is the category that I currently fall under.

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  14. I love this! I also love all of the Autism pieces!

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  15. I learned about the danger of trampolines for people with Marfan’s.

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  16. Larie is so creative! I love her constellation necklace!

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  17. Being honorary Aunt to Larie’s son, we have learned a lot about Marfan’s. We’ve seen him go through things a child his age shouldn’t have to worry about. And through it all he has not lost his fun loving sweet nature.
    Also, I can tell you that every thing Larie makes is beautiful, having a few of her pieces in my own collection. I’m sensitive to a lot of metals but have never had any trouble since she uses such good quality materials.

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  18. I’ve read through the info on the website multiple times, but I did not remember the percentage of people who are “first in their family” Marfans.

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  19. I like the hearts on fire earrings.

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  20. I retweeted your message about the giveaway @Ebee333.

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  21. I love the heart on fire pendent, its beautiful. I might just have to order it :)

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  22. I like the whole shop of Larie’s. but I think the heart bookmark is very sweet.

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  23. My cousin who is 4 has it and it completely changed our lives. When he was 6 months old he had open heart surgery to replace a heart valve and now he is as normal as a 4 year old with Marfan syndrome can be. I learned that his aorta must be watched so it doesn’t grow to large, burst, and kill him instantly. I have spoken at my school to raise awareness and I wear my “HaveHeart” wristband everyday. In addition, I have tweeted my cousin’s story and about Marfan Syndrome on my fan twitter @bieberSWATteam, which has just about 1,000 followers. I love my cousin with all my heart and hope he lives a long, healthy, playful life. <3 PLEASE RAISE AWARENESS AND SAVE LIVES!!!

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  24. I like the Trio with Teal earrings.

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  25. I learned so much! But, I didn’t know that one of the features of someone with Marfan was long and thin body type.

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  26. I like the ribbon heart bookmark from her shop.

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  27. Tweeted as handsdelight, but have no clue how to show you the tweet.

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  28. I love Larie’s things, thinking about the Have a Heart Book Marks for my sister-in-laws.

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  29. I love Larie’s Simple Things silver heart earrings! I have an outfit they would look fabulous with!

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  30. I visited the Marfan website and learned that dural ectasia can occur in the upper spine and neck as well as lower. :)

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  31. I learned that a dislocated lens is often the first sign identified in people with Marfan Syndrome

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  32. I love the Gold Plated and Black Glass Pearl Chandelier Earrings!! They’re gorgeous!

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  33. I love the Star Trapeze Necklace

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  34. I visited Larie’s website and found lots of things that I like — I am a lover of jewelry, especially dangly kinds. One of my favorite things was the jade and copper earrings. What is a lanyard?

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  35. I loved all of the pieces Larie’s Etsy site. I am just getting into wearing bracelets… and I love the Sea Foam Treasures bracelet. Gorgeous!

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  36. About Marfan: I was unaware that the cause of Marfan was a genetic defect in the body’s ability to create fibrillin-1. Because I know you and follow your site, I’ve learned a lot about how Marfan affects those living with it.

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  37. Love Larie’s Sea Foam jewlery!!!

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  38. Didn’t realize that there are a lot of other disorders that have similar Marfan’s symptoms but no genetic connection. I know quite a bit because I know Larie and she is excellent at explaining the syndrome.

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  39. I love everything Larie does, looking tonight, I really like the trapeze necklace. I think I’ll order some custom pieces for gifts.

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  40. I learned form the NMF website that pulmonary issure are not as common as others but many people with Marfan syndrom have sleep apnea. And, since my Grandson has Marfan’s and Larie is my Daughter, I’ve learned how strong, couragous, loving, giving, and wonderful she is.

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  41. I love the Seafoam Treasures bracelet. It’s gorgeous!

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  42. Prisoner of love heart earrings

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  43. i love the star trapeeze necklace!!

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