Hope for a Cure

My family and I used to manage a greeting cards and gifts company to raise awareness for my rare disease, Fibrodysplasia Ossificans Progressiva (FOP). My life revolved around planning my new card designs, watching my dad scan, print, and prepare the cards, and helping my mom package and label our products for the various craft fairs we attended each year. As stressful as it was, the decision to close the business in 2010 (after 10 years) was a difficult one to make. Even though I hadn’t always enjoyed every aspect of keeping up with a business, I missed having that type of lifestyle when it was over. I eventually stopped drawing and never seemed to be able to “find the time” to pick it up as a pastime.

…Until now. About a week ago, I was looking up one of my mom’s poems on my old website and noticed that the centered text somewhat formed the shape of a vase. That was all it took to inspire the artist in me; I immediately had a vision of what I wanted to create in honor of today’s FOP Awareness Day.

My mom wrote Always Have Hope a year or so after my FOP diagnosis in 1999:

When you struggle for answers,
and are trying to cope,
Believe in your heart…
Always have Hope!
Hope takes you further, is ready to go,
Hope holds the vision,when others say no.
Hope is the river,strong, full and deep
Hope knows no limits, no mountain too steep
Hope for a treatment, hope for a cure,
Believe in a miracle, holy and pure.
Hope hangs on, believes in the best
Hope is a journey, each minute a test.
When your spirit is weakened
and you’re trying to cope,
Believe in your heart..
Always have hope!

The words to this particular poem have been a part of my life ever since I was able to fully comprehend them. They’ve been beside me through every obstacle, encouraging me to remain hopeful and keep the faith. We’ve had a framed copy in every Connecticut house we’ve lived in, and we’d sell wallet-sized versions when we brought our products to craft fairs. My mom has told me that the sentences simply “came to her,” but I can’t imagine how difficult they must have been to actually live by. It inspires me that she found the strength within herself to write with such grace and eloquence after my unfathomable diagnosis.

AlwaysHaveHope-poem-FOP2016-cropped

Ten years ago today, April 23, 2006, the discovery of the ACVR1 gene mutation that causes FOP was announced to the public. It was a huge research breakthrough for all the scientists at the University of Pennsylvania School of Medicine who had been working tirelessly for years. The gene discovery announcement brought an incredible amount of hope to our entire community: the 800 people worldwide currently diagnosed with this disabling condition, our families and close friends, and all of the amazing people devoting their lives to finding a cure.

The researchers have made a lot of progress since the discovery and are now working to hopefully administer a drug, palovarotene, as a new treatment to prevent new bone growth in both adults and children with FOP. We’ve come a long way!

Hope for a treatment, hope for a cure... Always have hope.


Facebook | Twitter

Print Friendly, PDF & Email

Leave a Reply

12 Comments on "Hope for a Cure"

Notify of
avatar
Sort by:   newest | oldest
Scott
Guest

Jasmin,
Was so nice to meet you. Love your blog; read all pages. Such inspiring spirit. Will check out your musical recommendations. Meanwhile, I would like to recommend “Lewis and Clark” by Tommy Emmanuel as well as his TEDx talk/mini-concert. Hope you enjoy.
Best wishes,
Scott

Jasmin Floyd
Guest

Hi Scott! I apologize for this delayed reply. I loved meeting you and really enjoyed the panel and overall experience. I hope our paths cross again! Thank you so much for the recommendations; I will definitely check them out. I also just updated my song list!

ADEMOLA MAYOWA
Guest
Hi Jasmin, attitude has made a huge difference in the way you positivically turn the seemly heartbreaking turn of event into an avenue to inspire millions. I really love the spirit shown. I will like to offer help that brings real peace from God about a world where no resident will say I am sick. I received great help when I became weighed down with the ugly situations in the world at large. My longtime unquenchable question WHY was answered. If you are the religious type, please read Jeremiah 29:11, Isaiah 33:24, Daniel 2:44 and Revelation 21:3-5. If you are… Read more »
Cathee Antonetz
Guest
This is inspiring Jasmin! From many years ago I have saved one out of each of your artistic note cards to admire for myself. I am picturing them in my mind as I write this, heart of rainbow colors, tiger with blue background, flowers…and all having your adorable picture, two photos from different years, with a write up on the back cover. I also have your fabulous Mom’s Hope missive, a psalm coming straight from her heart. I love your latest artistic picture shown here, the vase filled with Hope and holding such colorful, blooming flowers. It has such profound… Read more »
Jasmin Floyd
Guest

Thank you for your kind words!! I’ll be in touch about possibly purchasing a copy! xoxo

Shivaun in the Desert
Guest
Shivaun in the Desert
JASMIN, my goodness, what a surprise this article is and the artwork as well. Thank you for your honesty and your decision to share your deep feelings and reflections. It is a great help to others who may have the diagnosis and a great help to those who wish to understand more; those who love you, as I most certainly do. Precious friend, I am so incredibly proud of you. I hope we will see each other when you return to California. I shall get up at the crack of dawn to find you…strolling on the sand. What fun we… Read more »
Jasmin Floyd
Guest

Thank you!!! I love you and am so excited to see you!!

Site Footer

Sliding Sidebar

Instagram

  • My first blog post of the year is dedicated tohellip
    3 days ago by p0sitivity My first blog post of the year is dedicated to everyone who has supported me throughout my life with FOP. ❤️❤️ jasminfloyd.com (link in bio)
  • After seven years of friendship we finally had the opportunityhellip
    1 week ago by p0sitivity After seven years of friendship, we finally had the opportunity to experience California together last month! It was such an honor to be able to share my FOP family with my bff ❤️
  • It is the places where your pain hides that needhellip
    2 weeks ago by p0sitivity “It is the places where your pain hides that need your love the most.” ✨ - @cleowade 
  • Already planning road trips together months in advance  missedhellip
    2 weeks ago by p0sitivity Already planning road trips together months in advance ‍♂️ missed my best friend ❤️
  • Spending this blizzardy day looking through pics from my triphellip
    3 weeks ago by p0sitivity Spending this blizzardy day looking through pics from my trip to CA last month - already excited for the next adventures ❤️  #twomonths  : @carolraleigh 
  • Too cute to move
    3 weeks ago by p0sitivity Too cute to move ‍♀️
  • Im extremely grateful to be surrounded by so many incrediblehellip
    3 weeks ago by p0sitivity I’m extremely grateful to be surrounded by so many incredible friends, family, and supporters. You’ve all given me hope, encouragement, strength, and courage to make it through each day. After a really difficult year with FOP, I’m so ready for new adventures and even more amazing memories. ❤❤❤  #2017 
  • Spending time back home in Wisconsin always reminds me ofhellip
    4 weeks ago by p0sitivity Spending time back home in Wisconsin always reminds me of my childhood self ❤️  #tbt 
  • When its 0F but feels like 22F anything is consideredhellip
    4 weeks ago by p0sitivity When it’s 0°F but “feels like” -22°F, anything is considered warmer ‍♀️☃️
  • Merry Christmas from my Midwest fam
    4 weeks ago by p0sitivity Merry Christmas from my Midwest fam ❤️

Categories