Bridging the Gap

Hello! If you are here, it probably means you know and love someone with SMARD (Spinal Muscular Atrophy with Respiratory Distress). SMARD, a genetic neuromuscular disorder, is extremely rare, and there is neither treatment nor cure.

Here at Bridging the Gap, we are hoping to offer a lifeline to families struggling with a SMARD diagnosis. Knowing that SMARD patients are few and far between, we would like to bridge the gap between us, as well as offer support and a community.

Welcome! If you have any questions or are recently diagnosed and don’t know where to begin, email us at bridgingthegapSMARD@hotmail.com

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8 Comments

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8 responses to “Bridging the Gap

  1. Hi, this is a comment.
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  2. I am so happy to have this site up and going! Thank you!! It is a GREAT idea, and is going to be a great resource to us with smard kids! I am very excited!

  3. Sarah Betteley (Jaime's Mum)

    Devon this website is great. Loved the idea of profiles on each of the kids – let me know what sort of thing ou want and I’ll send you Jaime’s info!

    Also had this response re: charity donations for SMARD research from The Manton Centre:

    Hi Sarah,
    This is fantastic! Assuring that your funds go to SMARD is easily something we can set-up. I will get the details and have the Trust here contact you. They will be able to give you information about the process. Interestingly, I was also contacted by a US family today about donating to SMARD research here.
    Best,
    Meghan

  4. Sarah Betteley (Jaime's Mum)

    One other thing – think it would be useful to add this website to google? (If that’s ok?) I know from my experience that the first thing you do when you get the SMARD diagnosis is to google it and we found very little info out there. Happy to do it for you if that’s ok?

  5. Sarah: definitely. That’s what we did with Dakin’s site and it went great!! Please do so!

  6. Sarah Betteley (Jaime's Mum)

    OK will do.

    Had a message back from Manton Centre:

    Hi Sarah,
    I hope you have been well. I wanted to introduce you to Samantha Morrison from the Children’s Hospital Boston Trust (cc’d on this email). Today, Samantha and I met about the possibility of setting up a funding opportunity for researchers here studying at SMARD (as you mentioned that you were hoping to do so). Samantha works with families who are interested in donating money to researchers, and works closely with a doctor who I am meeting with on Thursday to discuss beginning SMARD research. She will be able to answer any questions you may have about establishing a charity.
    Best,
    Meghan

    How far did we get with setting up a charity?

  7. Sarah Betteley (Jaime's Mum)

    I’ve registered the website with google. Done a search and can’t find it yet so I don’t know if it takes time?!?!

    Good news – Jaime has started shrugging her shoulders again 🙂

    • YAY on the shoulder shrugging!

      As for the showing up–it takes a lot of clicks for a site to get to close to the top of the search engine list–we have had Dakin’s blog up for over two years, so two years=lots of clicks=at the top of the list. So the more we click on it, the higher it will get!

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