SMA News Forums Forums Welcome Lounge Welcome, New Members

  • Welcome, New Members

    Posted by kevin-schaefer on September 14, 2018 at 11:00 am

    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.

    alyssa-silva replied 2 years, 10 months ago 11 Members · 24 Replies
  • 24 Replies
  • jason-raposo

    Member
    February 14, 2019 at 5:15 pm

    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!

     

    • kevin-schaefer

      Member
      February 14, 2019 at 7:45 pm

      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.

    • ryan-berhar

      Member
      February 14, 2019 at 10:59 pm

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

    • angela-j

      Member
      June 8, 2021 at 6:32 pm

      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! 🙂

      • alyssa-silva

        Member
        June 8, 2021 at 9:50 pm

        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?

      • angela-j

        Member
        June 9, 2021 at 3:56 pm

        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? 🙂

      • alyssa-silva

        Member
        June 10, 2021 at 1:22 pm

        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

      • angela-j

        Member
        June 10, 2021 at 3:48 pm

        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! 🙂

  • nicole-padayachee

    Member
    February 21, 2019 at 10:37 pm

    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)

    • deann-r

      Member
      February 22, 2019 at 9:40 am

      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!

    • kevin-schaefer

      Member
      February 22, 2019 at 10:00 am

      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!

    • ryan-berhar

      Member
      February 22, 2019 at 11:07 pm

      Welcome!

  • tracy-odell

    Member
    April 18, 2019 at 9:40 am

    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.

    • deann-r

      Member
      April 18, 2019 at 9:43 am

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

    • kevin-schaefer

      Member
      April 18, 2019 at 1:16 pm

      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.

    • ryan-berhar

      Member
      April 18, 2019 at 8:07 pm

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

  • andres-ceballos

    Member
    September 19, 2019 at 5:35 pm

    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

    • ryan-berhar

      Member
      September 19, 2019 at 5:42 pm

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

    • deann-r

      Member
      September 19, 2019 at 10:03 pm

      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.

  • slava

    Member
    June 12, 2020 at 8:02 am

    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. 🙂

  • alyssa-silva

    Member
    June 12, 2020 at 10:01 am

    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.

  • slava

    Member
    June 13, 2020 at 8:44 am

    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. 😉

  • blake-watson

    Member
    July 16, 2021 at 7:01 pm

    Hi peeps. ???? I’m Blake. I have SMA type 2. 36 years old. I work from home as a Software Engineer. I like doing side projects and playing board games and D&D. I have a personal website that has all my stuff: https://blakewatson.com/

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

    I searched for SMA on YouTube and came across the SMA News Today channel. ????

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

    I just enjoy connecting with other adults with SMA. I’m passionate about employment for people with disabilities so career topics are interesting to me. Other topics of interest are dating, assistive tech, and public benefits.

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

    I’m in the SMA Discord server. I used to be in the Living With MD group on Facebook but I deleted my account several years ago. I support NMD United monthly.

    • alyssa-silva

      Member
      July 18, 2021 at 10:55 pm

      Hey Blake, welcome! I’m one of the moderators here. If you have any questions about the forums or anything feel free to PM me. Looking forward to having you here.

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