Inclusion Zone Transcript

Learn Social Media Tricks from the Hydrocephalus Association

Transcription by Sarah Blahovec

ANNOUNCER: Blog Talk Radio

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MARY DOLAN: So hello everyone, my name is Mary Dolan and I’m with an organization called Inclusion Zone, and I’m very happy here to be with the Kiwanians of Bethesda, Maryland, woo! And we are at the Knights of Columbus in Bethesda which is a great find here, they’ve got one of the longest bars around that I’ve seen in a real long time. And I am very fortunate to be associated with the Kiwanis Club of Bethesda. You all have made possible the work of Inclusion Zone for the past few years, and just briefly to remind you all, Inclusion Zone was started out of the frustration of parents for seeing parent after parent going through the same trauma, problems, issues, when trying to get their children with disabilities into schools, into community life and into a bright future. And when I started a support group, I would have new people coming every month but it didn’t matter because the stories were always the same. And so I said this is, needs a little bit of a bigger platform, started podcasting in order to the idea of let’s not keep reinventing the wheel. So in addition to podcasting, Inclusion Zone’s also beginning to do some program development. There is no lack of issues facing families and children with disabilities in our region and in our country. DC which is where I live, has its special issues but they are not unlike Montgomery County or Arlington. So you all have helped make possible our work, my work, which is the work of the community in giving hope and inspiration to families that they’re not alone, giving them resources and hopefully moving forward to actually delivering some programs because there are so many gaps in what is needed and what is not yet provided. Trust me, I’ve been one of those parents where I couldn’t believe I was in this situation of this is not provided for my son or I have to fight this hard for my son, so I’ve changed as a result of that and I appreciate so very much your backing of that work that we’ve been doing. Along my journey, I have had the good fortune of meeting a colleague of Amanda’s, Amanda , Garzon. And Amanda’s colleague is a mom also and long story short, I met her, her friend is Melissa McCall, and I met Melissa because her child was in a school that I was teaching out, and her child was abused, and I was moved into a classroom because I reported on an abuse that I saw occur in another classroom. So we were both misfits placed into a classroom that we didn’t really belong in, me as an assistant teacher and little Abigail as a pre-K placed into a kindergarten classroom, with much, and first graders. But somehow Melissa and I found each other, and then I learned about the Hydrocephalus Association, which Amanda is the co-chair of for the DC area, I’ll let her not botch up her own title, and I had the good fortune of participating in the Hydrocephalus Walk a couple of months ago. So when you talk about people who know how to turn people out, this is one of those types of people. You know, this is a kind of a person who can get people to on a Saturday morning, or was it a Sunday? May have been a Saturday when I you know, I just wanted to hang out with my kids, but you know, I went, and I walked and for a couple hours in the heat and I had to talk to people I didn’t know, oh! And it was great, and I loved it, and it was one of those things I said oh, see, see? You didn’t want to do it but you did it and you loved it, but this is the kind of person who makes you do those things. So I’d like to introduce my newest friend, Amanda Garzon and I’d love for you to introduce yourself to these wonderful folks who are all heart and a lot of do do do, to tell them about you, your organization, and what’s your secrets?

AMANDA GARZON: So thank you Mary. When Mary asked me to come speak, I said, well let’s do this informally so that we can really enjoy our time together and I can also give you all the information that you really want or you find valuable from my experiences but also so that I can learn from everybody in the room, because I always approach everything as dual learning situation and I think that having an open mind and an open heart like that really allows relationships to cultivate in ways that you would never expect. And it could be five years from now or it could be next month where you see a really wonderful benefit occur from those relationships. So my name is Amanda Garzon, I’m the Director of Communications and Marketing at the Hydrocephalus Association. The Hydrocephalus Association is a national patient advocacy organization for individuals living with hydrocephalus. It was established in 1983 by three moms and one dad whose children were diagnosed with hydrocephalus at a time where there wasn’t the internet and there wasn’t cell phones and there was no information for families on the medical condition. The condition has been around since the beginning of time. And what hydrocephalus is is an abnormal accumulation of fluid in the brain. There is no treatment besides brain surgery to release the fluid from the brain, and there is no cure. And the typical treatment for hydrocephalus is the implantation a medical device called a shunt which is put into the brain, so a hole is drilled into the main area that accumulates fluid in the brain that we all have and then the fluid is taken down into part of the body to be absorbed. And this actually the tubing that is inside of a patient’s body that is draining the fluid. It has the highest failure rate of any medical device on the market, so usually for children with hydrocephalus, the device tends to fail within two years of being implanted and a child is going in for a repeat brain surgery. For some kids that timespan can be less, for others it can be a little bit longer. It actually has the same failure rate in the adult population. Adults are a little more resilient and we’re still trying to, there is no registry tracking the number of people who actually have hydrocephalus and how many revisions and treatments they have to have, so we are actually trying to address that issue as an association but we do know that there are approximately a million people in the United States living with hydrocephalus. You can be born with it, you can develop it from a brain injury, so anybody can get hydrocephalus at any time. Congresswoman Giffords got hydrocephalus after she was shot in the head. We have veterans who are returning from Afghanistan and Iraq who developed hydrocephalus after IED explosions. We have football players, NFL players, who developed it after repeated head trauma, and one of the most common reason for children to develop hydrocephalus is a journey that Melissa and I shared together, which was that our daughters were born incredibly prematurely and my daughter was born at 28 weeks so I was seven months into my pregnancy. She weighed two pounds when she was born and she had a brain hemorrhage, and that is the most common reason for hydrocephalus in children. There’s another form of hydrocephalus where there’s an estimate that 700,000 individuals over the age of 60 are actually afflicted by hydrocephalus and only about 20% of them are being properly diagnosed. And that is called Normal Pressure Hydrocephalus. It looks just like Alzheimer’s or Parkinson’s and it usually presents with a triad of symptoms, memory challenges, urinary challenges, and a gait, a very specific shuffle that develops, and when a person who has hydrocephalus is diagnosed with normal pressure hydrocephalus is treated, their symptoms tend to actually reverse. So as opposed to children and adults who’ve lived with hydrocephalus their whole lives, who live with a number of challenges that ripple effect off of the repeated brain trauma, individuals who’ve had healthy brains their whole lives and develop hydrocephalus as they’re aging, when they receive treatment, they actually reverse all of their symptoms. So it’s very interesting, condition, because for me, I have to do marketing for hydrocephalus to raise awareness and I have two very different populations that I have to try and raise awareness for but under one big umbrella. So that’s a little bit, my daughter is 16, she goes to Walter Johnson High School, she I saw your YMCA pin, remember it, we lived going to YMCA summer camp. She has had 15 brain surgeries and we consider ourselves very lucky that she’s only had 15. My coworker has had 108 brain surgeries. It’s not uncommon for particularly for children to have more brain surgeries than birthdays when they’re younger and then eventually they hit their teen years and you hopefully catch up, but one of my best friends is, you’ll see my phone light up a little bit because her son who is my daughter’s age is in the hospital for his 35th brain surgery right now. So it is a, you never know when you’re going to have brain surgery when your shunt is going to fail. So it is really unpredictable condition, it leads to a lot of depression and anxiety in adults, and that is on top of the learning challenges that children face, some of the comorbidities, autism, we have a 40% autism comorbidity, cerebral palsy, seizures, so there, and spina bifida. 90% of people with spina bifida have hydrocephalus, only about 10% of people with hydrocephalus have spina bifida, so we’re a big part of the spina bifida community and they’re a small part of our world and in terms of the overall population. So for children with hydrocephalus, it presents a lot of learning challenges so we’re advocating constantly for our kids, we’re in the IEP meetings, we’re educating parents about that, as well as physical challenges, and fitting in socially is really challenging. You know Gabby was never invited to a birthday party growing up, ever. So there’s a lot that the condition brings to the life of a family that really alters it. So my other role outside of my day job which is about 10 hours a day minimum is, and this is how Melissa and I know each other so well, and she’s Mary’s friend, I lead the Walk, I co-chair the Walk with Melissa and that is a walk that we use to raise awareness and funds for the Hydrocephalus Association. We have 48 walks around the country right now, I think this year we have 48 walks around the country, they’re 100% volunteer-led and my walk last year raised $86,000 for the association which was a first and Melissa and I have taken that walk from a $40,000 walk and doubled it. And so that was really exciting, Melissa and I love the Walk ‘cause for us it’s a chance to celebrate our community and we all get together and we have spirit contests and tee shirt contests, and we, my Girl Scout troop volunteers and they run all the games and we just have a great time. And then the other thing that Melissa and I do together is we are the chairs of the Community Network which is our support group for families, and so we host events. Tonight, we’re hosting a mommy meetup at Pie Pizzeria down in Bethesda, and at the same time she, our adult community is getting together at Red Hot and Blue in Gaithersburg with one of our adults who’s gonna be there and let people gather there. So we facilitate different meetings throughout the year and it can be having an expert come and talk to us, like a neuropsychologist or a lawyer on setting up special needs trusts or an educational consultant. On the 25th of February Melissa and I will be hosting an education day with Children’s National where a neurologist and a neurosurgeon will speak and a social worker and we’ll bring all of our families together so that they kind of have direct access to experts not in a 20-minute meeting where you gotta get out the door ‘cause you know, they need to see the next patient, where we can just really be with our patients. So I wear a lot of hats for hydrocephalus, probably much to the chagrin of my daughter, who’s forced to live it every second of the day, but it’s, you know, I get to live my mission as mom which is to, we are the only organization, the largest private funder of hydrocephalus research in the country, we’ve only been able to fund six million since 2009, which is a drop in the bucket in the research ecosystem, but there was nothing being funded before. And NIH only funds about six million dollars a year for the condition which is under a dollar a patient when you look at it and you compare that to other conditions that have a lower prevalence in the United States, that are getting $250 a patient so we’re very underfunded condition and underrecognized condition. So I have a, I push a huge boulder up a mountain. Or somebody actually told me the other night, you push a little peanut up a mountain, that was like really hard to control, a peanut, right, cause they roll in all different directions, and it’s a long road when you’re pushing a little peanut up the hill. So it’s a really wonderful job. So Mary, I know I asked Mary to think of questions based on your interest levels and for anybody to ask me questions about the work that I do or what we’ve been able to accomplish and it’s been interesting listening about the baseball league and stuff and of course my mind starts turning on, do this and this and this, and so it’s like how do you bring attention to smaller organizations. When I got to the Hydrocephalus Association, I had no budget, my budget last year was $1,00 for advertising, and so I have to do a lot on my own, so I know graphic design, I know desktop publishing, I know video editing, so I end up having to do a lot of the work myself and so it’s how do you make a difference on a shoestring budget, I think is something that does not get addressed enough, and how do you really make impact, so you know, I know that that’s an interesting topic.

MARY: Exactly. So to open the floor to questions, but I know that I’ve, I’ve been dragged kicking and screaming into the technology world. I still joke with my husband, oh I wish I still had my old DOS computer back in the day when I knew what F7 meant.

GARZON: Remember reveal codes and WordPerfect? I loved it.

MARY: Because once I learned that, then I knew what I was doing but then I changed and it had to change and now I’ve got like a state of the art and I’ve grown to love my Mac and then last night I was, oh, this thing we bought and I didn’t know how to use it and I was scared of it and now this thing is this microphone which apparently is fabulous and it’s supposed to make everything sound terrific. But I’m also supposed to be using Twitter and I’m supposed to also have a Facebook presence and I’m also supposed to be taking pictures and putting them on Instagram, and I need to respond to my Facebook message pages and my emails and oh my goodness. So can you discuss how, how did all that get done when you do have such a lofty mission, you are one person, and you can’t ignore those certain avenues of communication these days.

GARZON: So I think,

MARY: I need a cookie.

GARZON: Yes, everybody needs a cookie for this. It’s a great question. (laughs) Don’t put them down here actually. So for the first time, I actually am able to hire staff. I have one person, it’s amazing, I just wanna introduce Inez. Inez has been working with me since November, she’s actually Tweeting and Instagramming right now for us. Because I could do it while I’m sitting here talking to you but that would be very rude. So, but you know, we do tweet and instagram our events. You know when I first got to the Association and I sat down and thought what do we really need to do to make a presence for ourselves, I looked at the tools that were currently being used by the association so that was step number one, is evaluate what you have that you’re currently using. I mean it could just be Google, it could be Gmail. When I got in there were three different email applications that they were using. I’m like well how are you keeping track of who’s receiving emails and collecting email addresses so I closed that down very quickly and brought us into one product. But it’s, what do we currently have and what do we want to do. So are we trying to build membership, are we trying to build a digital footprint to the world, and again like if it’s gonna be all of those, where can I devote, where do we wanna devote most of the time. If you only have a mailing list of 10 people, then you wanna start with a digital footprint because you want to drive people onto your mailing list. If you have a really healthy mailing list, then you need to do more balance because you need to keep the people engaged that you have engaged with your organization while you’re focusing on creating that digital footprint. So then the next thing I did is I said okay, what’s our presence in the digital world? We have a website, our website was very old, at the time it was very outdated. We have a lot of information, we’re like an encyclopedia on hydrocephalus so how do we make the information accessible. Actually I’m not thrilled with our current website, I’ll probably redesign it but I think that’s the nature of the beast in today’s world, being able to redesign every three or four years. So how, so we had a website, we had a Facebook account, we did not have Twitter. We had Pinterest, I think, which I don’t even to this day know Pinterest, I try to find other people to help me with Pinterest. And I said okay, so what do we really need, what are the big players in the field right now? What are other nonprofits doing? So I did two things: I went and spoke to a friend of mine who was in the digital marketing space at a large firm in DC, and I said here’s my situation, here’s my budget, here’s what we currently have in house, what would you do. And he laughed for about 20 minutes and then he started talking to me about what the trends were for large organizations when they were dealing with their clients. What are the musts that they have to have. Then I went and just started Googling what other nonprofits are doing, so I would go to other nonprofits’ websites and see did they have a little Twitter icon on their home page, did they have Facebook. I would to look at their Facebook accounts and I would look at their Twitter profiles and I would see what kind of things that they were posting. And so then I made a plan for what we were going to do. So I chose the social media that I wanted to get involved with and I also chose that based on what my comfort level was with social media. I hate tweeting. This is being podcast, so I like tweeting, world. But I hate tweeting. First of all you’re like confined to 140 characters so you spend like 20 minutes just trying to take something down to 120, or 140 characters. And I was really excited when it looked like Twitter was dying but then President Trump actually re-enlivened Twitter, it was actually going to die last year and then it was kind of reinvigorated by President Trump ‘cause that’s his preferred method of communicating so now it’s like okay, back to Twitter again, which is, so I looked at what I wanted to do and I started accounts on all of those different channels. Then I branded everything so that there would always be a consistent look coming from my organization, so it wouldn’t matter if you were on Twitter, if you were on Facebook or if you were on our website, you would know ‘cause it would feel like HA. And I also started slowly doing that with all of our print materials, ‘cause none of our print materials were branded, and again, you know, we don’t have a big budget. We still to this day don’t have a big operating budget, and so it means I just saw you looking at me and it’s like stickers on folders, like right now I can’t afford for my community network to go print folders. We have folders for some of our national endeavors but we can’t afford to do it and localize them so but it’s making the sticker look as professional as possible. So once I set ourselves up and I just kind of did some basic branding, I then really looked and said, am I touching the people who I’m serving? Do they feel like they have a space on the website. And what did that mean? So I am a person of color, I am Mexican American, I have a lot of friends who are people of color, everybody on our website was white. And there were no people of color being represented on our site, and I had a very good friend of mine say to me, I don’t see myself in the organization. And then I started realizing that there were just a lack of pictures in general. And when you’re a parent and your child is first diagnosed with a condition, you’re terrified about what the future holds and you want to see a teenage child with hydrocephalus or an adult who’s living with hydrocephalus, you wanna see what that looks like, so I really started investing in faces of our condition and photography. And that could be me taking photography or asking people during their events to get photos taken and sending them to me. So I developed an asset library that I could then pull from to use as I was creating stuff at no cost, no cost. People had friends who were photographers who were volunteering to come and shoot their walk or shoot an event like a community networking day like this, and I would say to them hey, I need this kind of photo, I need like really great close ups of faces or I need somebody off-center so I can write text on the side of their photo when I do some promoting and stuff and so I did all that for free. So it was finding ways to do everything for free, social media’s free, so I started accounts, I designed graphics that kind of centered everything. The next big thing though was redesigning our website and we did have to pay for that. We had a board member who had a connection with somebody who does website design so we could get it at a discount, but we did have to redesign the website, but it was also, it was really about looking at my community and saying, are we reflective of who our community is. Then I would say the next thing which costs nothing is to just listen to your community. What does your community want to hear? One of the mistakes that a lot of organizations make when they get on social media, especially small organizations is to just promote all the stuff that they do. But people don’t wanna hear somebody talk about themselves, especially on social media. They want to engage. And engagement is the name of the game on social media. And so then it’s not only, it’s not only providing them consumables, right, so here’s our resource, here’s a video from our neurosurgeon on driving and hydrocephalus, here’s, so you have something that they can consume, that’s benefiting them, that they’re getting something from. Coupled, alternated with an announcement that there’s gonna be a meeting on June 25th, you know, ‘cause you do need to promote the things your organization is doing, and then also coupled with, then the next day it might be asking them a question. Does sound bother you. If you’re living with hydrocephalus, that’s what you find yourself more noise sensitive. And then everybody starts commenting. So that’s what’s called creating a content calendar, a digital media content calendar, and that’s kind of looking at what you need to promote to your followers so that you can be promoting your own work and your own organization, as well as looking at like how can I do something fun for them, how can I give them something they need, and so it allows you to put things in buckets, and once you create a content calendar, it actually makes managing social media really, really easy. So for us every Monday we post an important education question and everybody answers it, and it’s so great, so Monday mornings everybody starts off talking about hydrocephalus and they’re like listening to each other and they’re commenting on each other’s stuff, and then on Tuesday, we promote what’s happening around the country with our community network. On Wednesday we answer the question, we asked you guys this question, thank you so much for this feedback, it was incredible, we learned a lot, here’s a fact sheet on this topic or here’s a video that we’ve produced on this topic. So asking the question not only gives you an opportunity to respond and give them something that shows them that you’re giving something of value as an organization, but it also allows you to learn about new ways that things might be impacted so that you might actually develop additional resources around something that you might not have thought about. So you also get benefit from people interacting with you. Thursday’s our research day, Thursday is when we promote something about research so this morning, we announced, we have an innovator award and we just announced our awardee, the scientist who received that award. Last week though it was a blog about genetic causes of hydrocephalus that our director had written. So we alternate the types of research things that we do, and that people love to read about the latest research, it can be a new advancement in the field, it can be updating them on any of the research that we’re funding, it can be doing the announcements about a grant or asking people to participate in a patient study, we do a lot of recruitment for hospitals. Now hospitals are coming to us and asking us to help them recruit for their studies because we’ve created such a big following on social media. And then Friday’s fun Friday, we just do fun stuff. Inspirational quotes, quotes from our teens, our scholarship recipients, and so it’s creating that content calendar that really helps you. So why is that helpful? Because there are tools out there that allow you to schedule social media, and I spend a lot of time actively on social media, but on Monday we schedule everything out for the whole week. So we don’t have to worry about when things post because we know what times things are posting, and we use a tool because I was able to get it in the budget, that allows me to post simultaneously on Facebook, LinkedIn, Google Plus, Twitter, and Facebook. That’s very helpful, but there are free tools out there that do that too, HootSuite, you can sign up for HootSuite for free and you can link up your Facebook account, your Instagram account, your Twitter account, and you can post, you can schedule out your posts. So the other thing that I quickly realized was that I was an army of one, and I am only one person. So scheduling certainly helps, because then I don’t have to sit on social media all the time, which who wants to do that? But I also then and I will say I use interns a lot, Inez started as an intern so I use interns all the time. I just had a high school intern from Churchill High School make our 2016 year-end review video, ‘cause these days, social media, they come out of the womb punching Facebook and stuff, and they can create graphics really easily and little videos with slideshows and stuff. It’s incredible what they can do. It looks professional, and you can deploy it for nothing, right, ‘cause they get student service learning hours for it. They want to do it, they get to see their name on the national platform, it’s really exciting for them. But I also realize that I couldn’t do everything, so in addition to the interns, I trained all of our volunteers around the country to help me, so I taught them how to pitch press stories so that they could get into local press. I taught them how to manage their own social media channels, so I run a couple Facebook pages, so we have three Facebook pages that we oversee nationally, but then we have 38 or 42 Facebook pages that I also have to maintain overseas so I teach those volunteers what they’re allowed to post, how to post, how to schedule their posts. Then we also have 38 closed Facebook groups that I have to oversee. Again, I teach our volunteers how to do that, so I’ve created staff through volunteers who are taking on certain responsibilities, because I realized very quickly that if I wanted to amplify my reach, I had to ask other people to join me in the journey, and they were motivated because they’re volunteers and they believe in the mission and the causes, so they did it. So I brought some of my, some of the staff just over the years of how we’ve grown. I think I’m proud of the work we’ve done and I also think it’s interesting, so in 2013 we had 13,000 likes on our Facebook page, people who followed us, and we now have 29,054. So we’ve grown, we’ve done a nice job growing, we’ve grown about 20 percent every year. One year we had a 49 percent growth. Twitter, we had 2,000 people when I first started and now we’re at 4,600 so that’s nice. But really it was interesting, is I think Twitter’s gonna pick up really substantially this year, again because it’s becoming a platform of choice again. And LinkedIn, we had 204 people on our LinkedIn company page and we now have 614 people. So it’s like slowly, we’re not like huge, but we are absolutely making an impact. When I ran our social media, I ran a campaign on social media where everybody made signs. I made signs and people could download them and print them and it said, like, I’m a miracle baby or I’m a million-dollar baby or I’ve had X number of brain surgeries and they would fill it in. Or there are one million people living with hydrocephalus, I’m one of them. So I made all of these really fun signs. People would print them out and they would take pictures with their phone and put them up and tag us. We reached over four million people in that campaign. So even though my footprint is only 30,000, I’m reaching a bigger or even though my following is 30,000 I’m reaching a bigger audience on a daily basis. Yesterday we posted, we’re doing share the love for Valentine’s Day and we posted cover photos and profile pictures so people could change their cover photos and profile pictures for Valentine’s Day, and we have over 10,000 used, and we have a number of people now, so now as people are typing on their page we’re seeing everybody has the same profile picture which has our website on it. So they’re sharing the association with the world. So it’s learning how to do things like that. And so that’s some of the ways I did stuff on a budget, like I did a lot of the work myself, I looked for teenagers, I created that, and I really just made sure that everything looked consistent across the board from the get-go so that people felt like they were always with us. I listened to what people were saying and who they were so that I could reflect that in what we were sharing out to the world, and that could mean not only just visually but also like people needed information on something to write a blog on it, people wanted to hear from a neurosurgeon, we did a series with a neurosurgeon. So I listened a lot and we started returning to them what they wanted to see. And I think it’s hard for a nonprofit because I’ve worked in the for-profit and the nonprofit space, and in essence, these are customers who are consuming services and nonprofits don’t typically think of people that way. But in essence, you are. If you want people to come back to you, you need to give them a reason to come back to you. And so, you do need to be delivering services that people want in order to keep them engaged. So that’s just really a tip of the iceberg in terms of some of the stuff strategically that I look at with communications. There are other things if anybody’s interested, but I don’t wanna talk too much, I want to answer any questions that you might have, understand also some of the goals that you have as a group or even in your own businesses.

MARY: I took notes, this is good. And I’m a fast typist thanks to my mom wanted to make sure that her girls would always be hired and employed in life so I learned how to be a typist at a very young age so I’m very good.

GARZON: That was the best class I ever took in high school, that is the one skill that I can absolutely say I still use to this day.

MARY: Totally, absolutely, yeah. I can off to the side, so I can share that, but yeah, this is fantastic. I love, and I know I’m like oh gosh, that’s right, now I’m learning from what you’re saying and it’s the okay, getting over the hump, the fear of okay, let’s just go and doing it, and I know that these are some of the issues that you are all facing and that’s why when I learned about Amanda’s availability, I was like yes, come!

AUDIENCE MEMBER: I have two questions. One relates to I think, there are two different ones. I’ll do the photos that you mentioned.


AUDIENCE MEMBER: You said people want to see photos of teenagers and adults. Is that because they want to know that their child is going to get to the future, so they can see?

GARZON: I was, when Gabby was in the NICU, I looked for books on hydrocephalus or you know, or even just kids surviving the NICU. So scared, and she didn’t make it a couple of times, and I just needed hope. I needed to see hope. When I first got to the Association we were projecting a lot of images of the harder cases of hydrocephalus, and I as a mom, was like there are so many things to celebrate in our community, too. We can’t just project the hard stuff, and that could’ve been in articles or it could’ve been visually, whatever it was. But people need hope and we, all of our kids, hydrocephalus presents a very wide spectrum of abilities, but all of our kids are amazing in what they accomplish. But we weren’t messaging to that positive, we were messaging to the negative, like it’s the 25th brain surgery, they failed this year because of math, or as opposed to hey, they passed. They’re this amazing writer and they excelled in English or, I mean, so it was hard, it was hard to change that vision, it was very fortunate that I had a board that also felt the same way. Everybody on our board is connected to the condition personally except for one person, but he’s connected now because he’s been on our board for so long and he has a lot of friends. So you know, they also felt the same way, like what message are we trying to send? How are we gonna bring people to the Association and I realized that we were missing hope, and so I really focused on celebrating and hope and those were two things. So actually and I even brought this for you guys, I know you’re podcasting so I’ll just speak to what I’m doing, we, I wanted to move away from a traditional tri-fold when I got to the Association and I went to wrap cards because our doctors could fit these in our offices. But you can see that I always put images now so that people can see people who are living with the condition. This is information on the Association if anybody wants it.

AUDIENCE MEMBER: The other question I have, I don’t know if you can answer this or (garbled).

GARZON: You guys should ask me this, because it’s like when she first came to work, that would be an interesting question.

AUDIENCE MEMBER: So with Twitter, I didn’t know it was dying, too bad it didn’t go. Because I don’t really, I cannot for the life of me understand how Twitter continues because there’s so much coming down, there’s so many posts that I’ve seen like during a game or something, how do you get noticed? What could you possibly say in 140 words, (Garzon laughs), and I mean, in a normal scenario like you’re at a Kiwanis meeting, what would you say that anybody would take notice to as all these messages, and you’re right, now that the president tweets, he tweets all day long, and

GARZON: Or all night long.

AUDIENCE MEMBER: And they’re all retweeting the tweet, so we’re in all the noise, how do you?

INEZ: That has to do with hashtags, you create a hashtag, and people like it so they can click on it and see all the tweets that are happening in that hashtag, so that’s one thing to do, to try to get people involved.

GARZON: And do people understand what hashtags are ‘cause a lot of people,

INEZ: Little number sign.

GARZON: Right, and so hashtags are old-fashioned file cabinets, that’s what they are. They’re file cabinets on social media, so if you want to file something under the hydrocephalus folder, you always whenever you’re on Facebook or Twitter, you always use #hydrocephalus, because then Mary can go to Twitter, she can go to Facebook, and she can search by #hydrocephalus and anything anybody’s written about hydrocephalus will come up because everybody’s trained, especially these kids, to put the hashtag. So that’s how you follow conversation. So they’re filing cabinets.

(audience cross-talk)

AUDIENCE MEMBER: So there is one, there’s one hashtag, #KidsneedKiwanis, that now is out there for all the stuff about Kiwanis International.

GARZON: So if I wanted to be engaged with that, I would know to go look for it.

AUDIENCE MEMBER: A file, I’m so glad you said that because I use the hashtags, I follow hashtags all the time at conferences and what have you, when we’re there, we put the hashtag the conference name or whatever so everything.

GARZON: And that’s why, so everything can be organized.

AUDIENCE MEMBER: I did not know that. That being said, what kind of hashtags would you put?

INEZ: Well we put a lot of HA’s, the Hydrocephalus Association.

GARZON: We always hashtag hydrocephalus. If she was tweeting now, I’ll go and check her tweets (laughs), you know, we always will try and hashtag hydrocephalus but we have a couple hashtags that we also use so for this meeting we probably wouldn’t, there isn’t a hashtag that we would do specifically for like, you know, sharing to our partners or anything like that. But we would tag you so that it would show up in our feed and it would show up in your feed. If I knew that there was a hashtag you guys were using, like I didn’t, I should’ve looked before I came, but now that I know, we would potentially use that hashtag if we were tweeting about this. Sharing, you know, @kiwanis and we’re here sharing with @kiwanis about how to help kids, and then I would do hashtag, what is it?

AUDIENCE MEMBER: Kids need Kiwanis.

GARZON: Kids need Kiwanis, and so that way I would, that does two things, though. That not only uses hashtags, it also, it tags you guys so it shows up in your feed. So now all of your followers are having exposure to my organization because I’m tagging you. So there’s a lot of back scratching that happens in the social media world and you have to understand how to take advantage of that in order to find new followers. So you know, I get a lot of my volunteers to retweet a lot of stuff just personally because they have bigger followings than I have, right, so it’s all about amplifying your voice. And then it’s, so you follow other organizations that are like-minded to you, and then when something happens that affects both of you, you tag that other organization so that you’re showing up in their feeds as well. And then if you also like share some of the things that they’re doing, then there’s that back-scratching happening. They should be sharing some of the stuff that you do as well.

AUDIENCE MEMBER: So tagging, all these words are scary to me. So but now years later, it’s all the lingo. But still with tagging, that means somebody has, ‘cause I get, if somebody tags you in,

GARZON: Like a photo or something.

AUDIENCE MEMBER: A post, something like that, and so it does call you there, ‘cause you wanna see what. So you would tag just like if you’d hashtag.

GARZON: Hashtagging is different from tagging. I can explain the difference. So you would put a hashtag on a word within a tweet that a lot of people are following so that people can follow those conversations. Okay, tagging would be, Inez can show it too, but if we started typing @Kiwanis, then the actual organization, any Facebook pages for example or if we’re doing it on Twitter, any Twitter profiles that you were running, we would see that list and then we would be able to pick the one that was appropriate, so for you guys it would be your Bethesda page, it’d go to the Bethesda page and we would tag it, and then it would show up in your feed and it would be in our feed.

AUDIENCE MEMBER: And it’s just a function of?

GARZON: So I’m basically tagging your Facebook page, your account.

AUDIENCE MEMBER: Is there a click to do that, is there an icon, or?

GARZON: No, we can show you, Inez do you wanna show? You’re on Twitter, do they have, is there a, there has to be a Twitter profile.

INEZ: Okay, all this is showing up. So yours would be that one. So there, I tagged you.

AUDIENCE MEMBER: So when you tag me you just touch it and you go to the site.

INEZ: You do the at sign.

GARZON: So when you’re typing your own Tweet, so Amanda and Inez are having fun with the at Kiwanis and then we would see it and we would touch it just to let you guys, at their monthly luncheon.


AUDIENCE MEMBER: I’ve got a question.

GARZON: And then #KidsneedKiwanis.

AUDIENCE MEMBER: Where does a dinosaur go to learn this?

GARZON: You wanna know the best place?

AUDIENCE MEMBER: If you notice, you’ve got what she’s got.

MARY: Yeah, there’s no tweet on there.

AUDIENCE MEMBER: I’ve got email or whatever you damn call it once, and then I said why would I go through all the button pushing?

GARZON: I wouldn’t do it on that phone either.


AUDIENCE MEMBER: I am person to person, I prefer to call you, talk to you, okay. I don’t tweet, I don’t hashtag, I don’t nothing. Which is detrimental because I’ve got a group that we’ve got to expand and we’re having a very difficult time expanding, okay? I’m a Kiwanian, but I’ve got another project and that’s the Miracle League, okay? I need children who have special needs and I imagine these are children that have special needs.


AUDIENCE MEMBER: Okay, I want them to come out and play baseball, alright? That may sound frightening or may sound difficult but I have yet to find a disability that a child cannot come and play baseball, none. Alright? But I can’t get out there, right?

MARY: You haven’t been able to reach.

AUDIENCE MEMBER: There’s a large market (garbled), society, folks that work in professional, seniors that are retired and when I go up there, their trusty LG phone because it works very well, and the children that we want to come out to that baseball field or another program that we created called Discovery Abilities that we work with promoting at the Y, and many of these other small programs, specifically in our region, Montgomery County, they suffer the same fate. Becoming more and more rare, a working part, as a parent of a child, and having to learn things like your cell phone, there’s so many different steps to go through, where do you go to learn how to do this, not just to function but to do it so that you’ll capture that group. So reaching those folks, those children that come to give us a try for the first time, they come out, they hit the ball, they are supported very well and before you know it, they’re looking back at mom and dad and sit down, I got this. I can make it to first base, and they make it to first base and the smile on their face, and baseball may not be their driving force of coming of their age and growing up, and showing everybody what they can do, but it’ll give them something to bridge off what we managed to offer those (garbled) to play baseball. They hit the ball and go home with smiles, so when our children, our players leave the field with a smile on their face, we had a good day. We’ve had a great following with volunteers at different levels of middle school and high school students, baseball players, and they do that very well, but we don’t connect with them a different day to get hashtagging going, I gotta hashtag Autism Speaks every day, and I know that their past president, she’s the (garbled) through our son, and see that we need help. We all need to help each other. We all help each other, we all prosper, and we have to, we want to adapt to, what’s the best way to do that. Listen to what they’re really looking for and what they’re (garbled) their child and because me and my fearless leader (garbled). And he was having a great time out on the baseball field, and (garbled).

AUDIENCE MEMBER: I tend to clamp on people, he can tell you that. I see a prospect.

AUDIENCE MEMBER: Don’t know when to stop talking, so, that person’s connection.

MARY: Well I think it’s a little bit of both, and I’m gonna sign off of here because we’ve just been recording the wisdom here of Amanda so you can go back to it time and time again.

AUDIENCE MEMBER: And you mentioned this, Mary. It’s a collaboration between the Kiwanis and the YMCA Program.

MARY: Excellent. And before we sign off, we wanna make sure that we know about this fabulous program, which is a Kiwanis Club, YMCA coordinated program with scholarships available for swimming! Oh, I love that. That’s the best, water, best therapy, and if people are interested in the DC area in this, they should call the YMCA, yeah, they should call the YMCA of Bethesda, the one on Georgetown Road, and there’s a woman named Emily Hutton and I’m not gonna give you all the info ‘cause it’s too much to write down. So anyway, this has been Mary, signing off now from the wonderful Knights of Columbus in Bethesda with the oh so inspiring Kiwanis Club, thank you Amanda! Alright, over and out.

GARZON: So I will answer your question in many different ways.