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    • #14080
      Kevin Schaefer
      Keymaster

      Hey everyone, hope everyone has had a great week. I just wanted to say hello, and to welcome those of you who are new to the forums. Thanks for joining us here, and I hope you’ll find the community here to be supportive and helpful in your SMA journey.

      As a way to get to know all of you, please consider answering some of these questions. Also if you have any questions of your own or feedback, please feel free to post.

      -What brought you to the forums? Are you an SMA patient or caregiver?

      -What topics are you interested in discussing or learning more about?

      -Are you new to the SMA News Today community or have you been a part of it for a while?

      -Are you involved in any other SMA communities or advocacy groups?

      Feel free to tell anything else about your story that you’re comfortable sharing. Thank you.

    • #17222
      Jason Raposo
      Participant

      Hello everyone, My name is Jason and I have SMA type 3.  I currently work part time in sales, I really enjoy what I do.  I try to be as active as possible in life.  I find with living with SMA your mindset is really important in terms of how to manage your progression.  If you want to Chat or have any questions feel free to message or add me as a friend.  Cheers!

       

      • #17223
        Kevin Schaefer
        Keymaster

        Hey Jason, welcome! Thanks for introducing yourself.

        What kind of sales do you do? I have some friends in that industry. I work full-time here at BioNews Services (which is the parent company that owns this site), and my background is in writing and journalism.

        Glad to have you here, and feel free to jump in on any of the conversations here. And yeah, I totally agree that a good mindset is key not just to life with SMA, but life in general.

      • #17230
        Ryan Berhar
        Member

        Hey Jason, welcome! I’m Ryan, one of the moderators. Thanks for joining us.

      • #27252
        Angela J.
        Participant

        Hi everyone! My name is Angela, I’m 18 years old, from Michigan, and I have SMA Type II. I was diagnosed at 2 years old I believe. I just joined this community last night. I’m looking to make friends with girls close to my age. I’ve had trouble finding girls with Type II that are close to my age so I’m hoping to find some friends on here.

        I graduated from high school last year and I currently am not working but I have big dreams to make an online game. I can’t code though and I’m not a great artist (not to mention my arms are very weak) so I’m hoping to find some people to help me bring my ideas to life.

        On my free time I game and watch TV. I love fashion and makeup, and I love fantasy things, especially fairies and mermaids and unicorns! I love discussing these topics. I’m also passionate about helping animals and it makes me feel really good when I sign petitions to help animals and completing quick online actions to help animals.

        Thanks for reading my bio and have a great day! 🙂

        • #27255
          Alyssa Silva
          Keymaster

          Welcome, Angela! I’m 30 years old living with type 1. I know I’m a little older than you, but I love fashion and makeup as well! The community here is also very engaging and welcoming, so I’m sure you’ll meet some new people. 🙂

          Where do you like to shop?

        • #27261
          Angela J.
          Participant

          Hi Alyssa! I usually don’t get out of the house much to shop but my favorite shops are probably GAP Kids (I’m very underweight so I have to shop in the kids department which really sucks), Kohl’s, Target and Old Navy. I’m really into cute fashion and Lolita fashion. I love other styles too though like alternative and goth. I read one of your recent posts about dealing without caregivers during the pandemic. In your bio underneath the post I noticed it said you’re the director of an adaptive fashion company. I think that’s really cool. What’s the name of it? I was actually thinking about starting my own company too until I realized it would be too exhausting for me. Maybe I could give you some ideas? 🙂

        • #27269
          Alyssa Silva
          Keymaster

          I am very underweight and have the same problem. I get most of my pants/jeans at H & M kids because they’re still fashionable and get a lot of my tops at American Eagle because they have XS and XXS sizes! Their clothes are also super soft and comfy. I shop around a lot but these two stores have never failed me!

          You should definitely check out the fashion brand I work for! It’s called Intimately, and I actually just redid our website. 🙂 it’s http://www.intimately.co

        • #27273
          Angela J.
          Participant

          Oh yeah those stores are really good too. I just don’t know if XS or XXS would fit me. My mom does my shopping for me so she knows what fits me and what doesn’t. Unfortunately though most of my clothes don’t look very grown up though. I love cute clothes but sometimes I want to look grown up too! I weigh 40 lbs and I’m almost 5’ tall but my shoulders and chest is very narrow due to my very small lungs. So basically I’m like a string bean, long and skinny! 😂 I found one Lolita clothing website where you can type in your body measurements and they tailor the clothes to your measurements, which is perfect for me and I plan to use it eventually. I just wish there were more sites like that because obviously I wouldn’t wear Lolita clothing every day and everywhere since it’s too fancy. I’ll definitely check out your website though! 🙂

    • #17368
      Nicole Padayachee
      Participant

      Hey Everyone,

       

      My name is Nicole, and I have type II. I was diagnosed on my second birthday… I’m currently 16, turning 17 in 20 Days!!! I live in South Africa, Durban to be more specific. I’m in my final year of school, hoping to study Law at a tertiary level next year. I’ve been reading on this website for quite a while, but I’m new to the forums. I love being asked questions, especially ones that will help broaden your understanding of SMA.

       

      (sorry in advance if I have spelling or grammatical errors)

      • #17377
        DeAnn R
        Keymaster

        Welcome Nicole!  Great to have you here.  How exciting to be finishing up school and looking at studying law.  Please feel free to share your experiences.  These forums are a great resource and we love hearing all perspectives.  Happy early Birthday!

      • #17381
        Kevin Schaefer
        Keymaster

        Hey Nicole! Thanks for introducing yourself.

        I’m 25 and also type 2. I majored in English in college, and I now work full-time for this site’s parent company BioNews Services. Feel free to ask me any questions.

        Congrats on almost being done with school and happy early birthday!

      • #17397
        Ryan Berhar
        Member

        Welcome!

    • #18403
      Tracy Odell
      Participant

      I’m Tracy and I’m new to this forum. I live in Toronto, Ontario, Canada. I have SMA Type II as does my sister. I have just turned 61, and sist is 65 now. We were originally predicted to live to 12 only, then 18, then 30 before doctors quit trying to predict our life span. We both lived in an institution for kids with physical disabilities. I was there from age 7 until I signed myself out at age 18. My sister was admitted the same year as me (1965) but she was 11, so I was institutionalized longer.

      At the time I left, we were starting to see supports services in the community for people with disabilities to live independently with supports. It meant that I could live by myself but have physical assistance paid for by the government. Because of this, I was able to go to university, begin my career, and work full time until I retired at the age of 60.

      I am now married 30+ years. My husband and I have 2 grown daughters and a granddaughter who will be a teenager before too long.

      I volunteer with a number of organizations. Citizens with Disabilities – Ontario (CWDO) advocates and educates around making society and systems more accessible for us. PACE Independent Living provides support services to people with physical disabilities, head injuries, and disabilities like Parkinson’s to live their life in the community. I’m also active in my local church and on an advisory committee with the Council of Canadians with Disabilities (CCD) to address transportation – whether it be trains, planes, interprovincial buses or ferries. And for the first time this year, I served as a juror to select films for the ReelAbilities Film Festival in Toronto!

      I consider myself a “living fossil” with regard to societal changes which have helped people with disabilities move forward. I’m looking forward to reading conversations about other people’s experiences and to chime in about mind wherever appropriate, and I hope, helpful.

      • #18406
        DeAnn R
        Keymaster

        Welcome Tracy, and all the newbies to the forum. I think you’ll find it’s a great community to be a part of.

      • #18409
        Kevin Schaefer
        Keymaster

        Thanks for sharing Tracy! That’s really interesting about your advocacy work, and the resources you had in your young adult life. I have a goal to start an independent living space for people with disabilities, which I’ve posted about here before. I’ll definitely keep in touch with you.

        Thanks for joining us! Like DeAnn said, I think you’ll find this to be a supportive community.

      • #18434
        Ryan Berhar
        Member

        Hey Tracy! Thanks for sharing part of your story. Again, welcome aboard.

    • #20662
      Andres Ceballos
      Participant

      Hi everybody how are you,

      My name is Andres, I live in Colombia, I have SMA 3, sorry for my English, I speak Spanish, I am pleased to meet you and talk about the sma, I would like to learn English to interact more with you, greetings

      • #20664
        Ryan Berhar
        Member

        Hey Andres, welcome! I’m Ryan, one of the forum moderators. Please let me know if you have any questions. Thanks for joining us!

      • #20665
        DeAnn R
        Keymaster

        Hola Andres! That’s all I know in Spanish. Welcome. Good to have you with us. If you don’t mind my asking, as type 3 do you still walk? Just curious. I find the range of abilities with SMA fascinating.

    • #23872
      Slava
      Participant

      Hi! My name is Slava. Thanks for approving my membership even though I don’t live in the USA. It’s important to me to broaden my horizons in search of the better opportunities for my rear situation. I’m 42 years old and I have SMA type 2. Basically, all I can do now is move a computer mouse around, which has been enough for me tell me a working as a web designer, a CGI artist and a video editor. But definitely it isn’t enough for me to go as a human being as I’m not going out much. 🙂

    • #23880
      Alyssa Silva
      Keymaster

      Welcome! We’re so happy to have you here, Slava. Like you, I’m mostly limited to a computer mouse as far as abilities go. I’m actually in the process of teaching myself how to design websites, so you’ll have to give me pointers one day! Your job sounds so fun.

    • #23932
      Slava
      Participant

      Thanks Alyssa! Sure, if I can be any help, you can ask questions regarding websites, although lately I’ve been into 3D and video editing business. I take orders from all over the world. So if you know anyone interested, feel free to let me know. 😉

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