Please stand by for realtime captions. >>I want to start by welcoming everyone. This is Robin Bull with NCDB. I just want to mention that all the phone lines have been muted to alleviate the background noise and there will be a question-and-answer session at the end of the presentation. However, you can write your questions in the chat pod during the webinar. We will be monitoring that. I want to mention that this webinar will be recorded and archived for future viewing. I will start the recording here. When you hear the recording message, that will be your Q2 start. >> Welcome, everyone. This is Sam Morgan. I am the program director with NCDB. I am just here today to introduce the webinar and also Nancy before she gets going. So this is I think really good timing for us in terms of bringing some or focus it back on Usher Syndrome. We have not had a lot of focus on this area in the last two years so this is a great opportunity for us nationally and as a project. I just want to introduce Nancy and I am sure many of you know her. She has been in the field for quite a while. In a way, it feels that Nancy you are returning from a hiatus. It's really nice to have you back working with us and working collaboratively together. I am sure a lot of you know Nancy for a broad range of work she has done over the years and really specifically her work around congenital rubella syndrome and that registry and her work with family over the years. And then in developing and disseminating these resources and products in deaf blindness. So she currently works for the National Usher Syndrome Coalition and she is the director of the trust which she is here to talk about today. Take it away, Nancy. >> Hello. Thank you for the nice introduction. I want to make sure everyone can hear me? >> You can't hear me telling you that we can hear you but we can hear you. >> Thank you so much for this opportunity to present and start a dialogue today about some things that as Sam said have been on the back burner for a while and a great opportunity for the Usher syndrome coalition and NCDB to get a dialogue on a national basis. >> I will start off with the title which is where is everybody? Again, starting a national dialogue on finding children with Usher Syndrome. Sam already gave you my background. A little more information is I was part of the original technical assistance Center grant in 1984 and I also worked for many years on DB-LINK on the information part of the previous version of NCDB, so it really is coming home and working with good colleagues, not only at NCDB but around the country . Kind of fun. I started with the National Usher Syndrome Coalition as the director of their international registry and had a lot of experiencing managing the HKNC registry so it's a great fit and I am thankful to be back in. >> The coalition was something I had worked with but I had gotten to know our mission so much better. We only focus on Usher Syndrome. We are international in scope. We work with individuals with Usher Syndrome of all ages, and all subtypes of Usher Syndrome. In addition, we provide information and resources and support for family members and loved ones and anyone who is in the general community of Usher. We don't do research. >> What we are is the bridge between the research community and the Usher community. Is an important function because researchers are hard at work investigating many aspects of Usher syndrome in terms of treatment and cures for the vision loss associated with retinitis pigmentosa or RP. But the one thing that they have told us is they can't find people with Usher Syndrome. There are many reasons for that, especially since Usher Syndrome is -- affects vision and hearing which affects easy communication. So there are alternate ways to reach out to the community. That is the thing we do and I have had a lot of fun over the last year and half doing just that. >> So the goals for this webinar our number one to provide an overview of Usher Syndrome so we make sure we are all on the same page. An interesting look at the numbers. That is a nebulous area but it's a great place for us to start this national discussion and I want to go over some of the resources available to the Usher syndrome community through the coalition. >> We will start with the overview. >> Usher Syndrome was first identified in 1858 and it was first described by a German ophthalmologist. In 1914, Charles Usher, whose name is very near and dear to us, a British ophthalmologist studied 69 individuals, and he was the one who named it and we are now blessed with his name for this. It's a capital you and little asked. We are working with individuals who have this for over 100 years. And so where are we? Well, we know that it involves a congenital and bilateral sensory -- send so neural hearing loss. Retinitis pigmentosa or RP which is manifested by night blindness or progressive vision loss is the second sign of Usher syndrome and in two of the subtypes there are vestibular issues. >> Usher syndrome is the most common genetic cause of combined vision and hearing loss. It is recessive meaning that in order for a person to have Usher syndrome they must get one gene from the mother and one gene from the father. It affects males and females, and as I mentioned, there are three major subtypes. So Usher syndrome type I, these are typically children who were maybe schooled at schooled for -- schools for the deaf in the old days and they have a profound hearing loss. Typically early on sate -- onset RP and the balance issues go along with type I. Currently, there are six subtypes of type I and they are 1B, 1C, 1D, 1E, one matter of, and 1G. >> Type II is moderate to severe hearing loss and RP is evident in the 10 years and typically no balance problems and schooled in a mainstream setting, more than a school for the deaf and part of the hearing culture. There are three subtypes Usher to a to see an 2-D with two letter a being the most common subtype. >> Then there is type III which is quite rare for instance a child would be born with vision and hearing and what have a progressive loss of both. And then balance issues are prominent in part of the population, not everyone and that is progressive as well. This is more commonly seen in Finland and in Ashkenazi Jews. It's very rare as I mentioned. We know that 3A has been identified as to whether there may be another subtype. >> Then we find that there is that a typical Usher syndrome that doesn't fit into any of the first three categories. It may be that the symptoms have not fully expressed or the symptoms or doubt -- our absence are we estimate about 20% as maybe a gene that has not been identified. >> There is still a lot of research to do on the whole idea of what really is Usher syndrome. >> Let's take a look at the numbers. Sends them out just registry is our main product at the coalition and such an important bridge between researchers and the community, we are trying to figure out how many people with Usher syndrome live in the United States and around the world. It's a slippery slope as my boss -- old boss would say. The prevalence of this on the conservative side has been estimated to be 3% to 6% of children with congenital bilateral SNHL. In later studies and as a result of some of the screening that one on that schools for the deaf, that number was raised and estimates were more likely 8% to 10% of children with congenital bilateral SNHL. That percentage was nice to have but it did not give us a number. >> I took a look to see how many congenitally deaf or hard of hearing children are out there so that we can then extrapolate the number of kids with Usher syndrome. In 2015, the CDC said that there were about 4 million babies born annually. That has been fairly consistent over the past 21 years, which is the time span I look at. If three out of 1000 were born with congenital bilateral -- congenital bilateral sensorineural hearing loss cut that would equal 12,000 babies a year that were born with hearing loss. If you times that by 21, which is the age range for children who are eligible to receive educational services, that would mean we have 252,000 congenitally deaf or hard of hearing use -- you. Children >> If we took that number and extrapolated how many children with Usher does Usher there might be up there, so out of those 252,000 birth to 21, let's say 3% of them had Usher syndrome, that would mean there were 7500 Usher syndrome, that would mean there were 7560 children . Still in the conservative range 6% would equal 15,120. We can go up to 8% and that would be 20,160 and if it went to the highest guesstimate of 10%, we would be around 25,000 kids. That number really made me sit back and think. I never kind of put it into a solid number where we were always thinking of percentages, which didn't mean much to me so that was pretty concrete. >> In order to check myself and again these are all estimates, I went back to the number we used at the coalition that there are an estimated 50,000 individuals with Usher syndrome in the United States. Life expectancy is on average up to the age of 80. So if we very roughly estimated how many babies are born every year, zero the 80, and divided 50,000 x 80, we come up with about 625 Usher births a year . Because it's that depended on a virus or an epidemic. It is a genetic condition and it should be fairly constant. But these numbers again are very rough. If we use that number and we times 625% year times 21 we get 13,000 625% year times 21 we get 13,125 children with Usher syndrome. >> So the numbers are pretty high, which made me go back to the count that NCDB has with the national child count and our own registry. >> What we have in the USH trust which is our branded name for our registry, is 180 children birth to age 21 and the United States. NCDB in 2015 reported 295 children with Usher. And thank you Mark for explaining to me that the actual number of children eligible to receive services in 2015 was 352. The discrepancy is because the snapshot is taken on December 1 so whomever is in on December one that is what is reflected in the count. Whether it is 352 or 295 or 180, that is a huge discrepancy with the numbers I just quoted you. >> Which begs the question, where are the thousands of children with Usher syndrome in the United States? >> So we know some of the reasons, and perhaps they are not identified with Usher syndrome . Since screening just has occurred within the last few years, relatively speaking, the hearing loss may be diagnosed in infancy but not the vision loss. The medical community, as we have learned, story after story from families we work with in the metal community, many are still unaware of Usher syndrome. People could be identified birth to 21 and living well. Perhaps they had a cochlear implant. I saw that in the report from 2015 there was a huge increase in the number of children with Usher syndrome who received cochlear implants and if their vision is still good they may not look to have a further diagnosis or they may feel that they are fine and why should I go out there and tell people that I have Usher syndrome. So there may not be a reason in their mind to formally identified themselves or register. And those are all legitimate reasons. >> Or it's possible that why do I even say anything because maybe there is no one else out there with Usher syndrome . Many adult that we work with have told us that I didn't know anyone with Usher syndrome until I reached the center or I went to Seattle or I happened to meet someone at a social event. Another reason could be that people with Usher syndrome, families of children are unaware of the resources. Maybe they haven't heard of the National Usher Syndrome Coalition or NCDB or they don't know how to find a state project and they don't know you are all there and maybe they haven't heard of HKNC either. >> That is why I wanted to speak with all of you today because if there are these thousands of kids out there, let's get them and let's help them and give them the information and give them their choices. If we could identify more kids, what with the benefit be? Well, it would certainly change the profile of the deaf blind children which have particularly hovered at 10,000 or under. If we conservatively say there are 13,000 kids with Usher syndrome, that would turn everything upside down. And we would have to figure out are we ready for that and can we get ready for that if that were to happen. Are we ready to and can we provide support to children and families because as I understand it, 90% of the children served to the state deaf blind project and the child count of additional disabilities. More than hearing loss and vision loss. So it kind of changes the profile of where a person may have to go and we need to figure out how to balance that. >> If we had a better identification of this population, we could learn about Usher syndrome in its entirety. Starting with the natural history right from day one. I can tell you that one of the interesting things when you think about the Usher community , I have worked in the field for -- this is my 30th year and I have always worked with adults who are deaf blind but it has been this huge community and you know the pocket of people with Usher syndrome but have they ever been looked at as a whole? As a unique sub community of the deaf blind community. All the way back in the 60s when [Indiscernible] started his work and studies and interviews and looked at numbers, yes we started to figure out what Usher syndrome was and what it meant. And also with Bill [Indiscernible] doing a genetic research etc. also with Bill [Indiscernible] doing a genetic research etc. But now we are starting to see that as we get more in more people into our registry and as we work with researchers, interesting questions do come up. But if we are all together as one, we can inform the community about resources that are out there, the treatment, the child, and make sure that many are asking for. >> So the identification efforts include newborn hearing screenings and that is great. Informing the medical profession. I just had a parent send a comment to the coalition just to remind everyone that this is still a recent issue, the child was recently diagnosed with Usher syndrome, but failed the newborn hearing screening and went to the pediatric ENT and said is there anything else I should do. My child has been diagnosed with hearing loss. Don't worry. It doesn't matter whether hearing loss came from, just make sure you continue to go every year for the audiology test. It was only because the child was having kidney issues that the mother went to a renal specialist and it was the renal specialist said, you may want to consider following through checking for vision loss and Usher syndrome , and the child does indeed have Usher syndrome. So we still have a lot of work to do in the medical community. And I wanted to ask this group here today, perhaps we can discuss this after the presentation, is there used to be statewide screenings at school for the deaf. I remember Kansas stands out in my mind as having the Kansas screening for Usher syndrome. Gil Leslie and I were talking about this and I was wondering what happened to that data and are any states continuing to do that screening in schools for the deaf so that would help tremendously with our identification. >> And then what do we have and how do we support the community? I wanted to go briefly over some of the resources that the coalition offers. So the registry is my baby and I will start with that. We only focus on Usher syndrome . It is exclusive to Usher syndrome. We are worldwide. We are inclusive of all ages and subtypes. And we have the capacity and the ability to collect registry information in multiple languages which all goes in to one database. You can find more information at our website which is http://www.usher-registry.org/ and Robin will be posting hyperlinks in the chat box for all of this. I will continue to read these out and they will be posted later. >> A second initiative, which would be very helpful, and I want everyone to know about is our collaboration with project usher and that is called unraveling USH. Genetic testing is key for a few reasons. Number one, it's possible that someone has deafness and RP and it's not genetic or it is not Usher syndrome. It could be deafness from another cause. There are other syndromes that can mimic it. So the first thing we would want to encourage is genetic testing. As we know, it can be expensive and insurance companies don't always pay for that. So through project Usher there is financial assistance available. And we know it is confusing. Where do I go and what do I do and how do I start the process so on the website we have outlined step-by-step , go to your doctor or your genetic counselor and here is a form to give to them. Download this letter that your doctor can send them to your insurance company. Here is a diagnostic tools for Usher syndrome. It's really very helpful and the URL will be in the chat box and available. >> Other resources are USH talks which are short webcast about Usher syndrome and related topics. This is a new feature that we just released over the past few months. It -- there is one now on Usher syndrome and cochlear implant. There is one on genetic testing, and we have national and will have international expert providing very short podcast. They are 5 to 10 minutes long, and since the PowerPoint is there they are also captioned and are accessible. We have three or four of them and the URL is there. >> USH is our annual conference in our next one is in July in Chicago and we invite anyone interested to sign up early. Registration is available on the website. The format of the annual conference is that we have meeting researchers come in -- leading researchers come in in the morning and give an overview on some of the leading research and we have a panel of presenters, children and individuals with Usher talk about their personal experiences. It's a great time the network and you can talk to them that evening and the social functions and children and siblings, and there are activities during the day for them. Next year we will have a scientific conference in Germany which will be similar to the format that we had in 24 seen at Harvard in Boston. Where we had a whole day of scientists talking with each other and had a great chance to share their information with each other and then on the second day, the family conference, that research information is kind of translator down to a level where we can understand it and it is translated to a more layperson level. So we try to make the information available to all in those two days. So that is kind of exciting. Having our conference in Germany really shows our international connection, and that has been a fun part of the job, finding all the people around the world who are researching Usher syndrome and the challenges they face, which are very similar to here in the state. >> We have the blog which is written by an individual who may have Usher syndrome . It could be a family member, a staff person, someone in the Usher community and it gives their perspective and reflections addressing a topic of interest. It also has a connection to family members who have blogs which could be helpful for other parents. Of course, we have social media and Facebook and Twitter and every year we have the equinox campaign which is a worldwide campaign to increase awareness about Usher syndrome . It is the third Saturday in September, and basically that is the day of the equinox when the hours of darkness start to take over and the daylight hours are shorter. So we say darn it, we will own the equinox. It's a very inspiring time of year for us because people all over different countries do different activities for the days leading up to it. >> Support and treatments and your. Those are the three things that we can provide through the coalition in addition to the bridge between researchers and the community. Young children and families are the ones who stand to benefit the most. That is why I feel it's important to be here because the treatment may be coming along. The clinical trials are happening in some cases. It's the young children who still have a lot of usable vision that may be able to participate or once the solutions are found, they will benefit the most from it. I really want to reach out and find everyone so they have the chance to learn about this information and make the decision that is right for them. They can't benefit from it if they don't know about it. Some research has -- researchers have said that the cure for RP will come in the next 10 years. I never hold anyone to those statements, but after having Usher syndrome identified for more than 100 years, 10 years sounds like a pretty short time. So it is within reach. But for all of those issues, one would need to have genetic verification of the diagnosis in order to participate and, in fact, know the specific gene may be helpful as things get more and more focused and specific subtypes. >> In the 2015 NCDB report, I pulled out this quote and we agree with it , the opportunity for early identification, intervention, and the provision of instructional services aimed at the unique needs of young children and students who are deaf blind is a critical component that cannot be lost. >> I think we have lost it a little bit and as Sam mentioned, this is a great time to bring the focus back with renewed energy and enthusiasm. So thank you, trend to and to Linda and Sam and Gail and Robin for the opportunity to present this webinar and to continue to work together and to mark for providing are some demographic details. >> I want you all to stay tuned because NCDB will be presenting a USH talk with an overview of services available for children with Usher syndrome and their families . And our own Megan Cody will be presenting as well. This is a present -- the beginning of a beautiful collaboration. This is the end of my presentation, and I would love to open it up to questions or comments or input or etc. Thank you. >> Nancy, this is Sam. I don't know if you know this off the top of your head so I don't mean to put you on the spot, do you know the percentage breakdown between Usher 12 or three within the total number because I think that has some implications for identification as well in terms of when it would manifest and so when it would be more obvious within the childhood population as we are thinking about that a little bit . >> This is Nancy. Let me clarify. You want to know what the breakdown is for Usher one, two, and three, the subtypes or the prevalence? >> Yes. Within the total number of people with Usher syndrome. What percentage have Usher one and what percentage have Usher two and three? >> I can't give you that number because again, all of our numbers are estimates are within the subtypes. I can give you the frequency. So for example with an Usher one, that has six subtypes. Usher 1B, 50 to 60% of people with Usher one have 1B. The next common subtype of Usher one is one D with 15% to 20% and then Usher 1F which is common in individuals with Ashkenazi Jewish heritage. So those at the top three Usher type I. And ushered to the most common 80% of people with Usher to have two letter a. And 95% of individuals with Usher three have to a 2 a. I can get back with you with the other numbers. >> Thank you. >> You are welcome. >> I am not sure if I am supposed to read from the pod. There are lots of comments in the chat box. Robin, can you help me with that. Should I read it out loud? I can do that. >> Yes. There are some comments in their and a few questions. If you want to -- kind of mixed in with the links I put in their. You might just glanced through their really quickly and see if there is anything you want to respond to and read those out loud. >> Absolutely. My understanding was that some people were just going to be calling in and you wouldn't have access to the information in the chat box so I will go through that. Cindy asked how can we print the PowerPoint and Gail Leslie said it will be part of the items available as long -- as well as the recording of the webinar. This will all be available to you later on. The captioning file will be available afterwards. Robin posted that the URL for the webinar recording. You mentioned that the state projects did screenings in the early 2000's as well. I would like to know where those numbers are. Cindy from Arizona said, they did statewide screenings up until maybe five or six years ago and did very few children. Epic and they didn't identify any. They worked with Doctor [Indiscernible] Devonport another early researcher and even had a research project going on at the University of Arizona. And it's very disappointing results and they stop doing the screen. >> Cindy also said we put together and in-service training packet that included step-by-step instructions for providing the training on Usher syndrome with handout templates, a training guide, and a video on Usher during the training. That was a while ago. Every project that a copy of the project. It was different from the campus project which as I recall included the [Indiscernible]. >> Many states created products on Usher screening and there was quite a collection. >> Mark said that about 75% of the kids on the deaf blind Caldecott -- count have type I. And I got to request from two different people to help connect them with an adult with Usher syndrome in that area. Since I only know two people, I wonder if the trust can help with this. Locating people who can become adult mentors and actually meet with children with Usher syndrome were looking for answers. This is Nancy. I am glad you brought that up. We have been reaching out to people in the USH trust to connect parents with parents and this is another great thing that we certainly can do. Especially since the numbers for example, we had parents of kids with Usher one D and since it's so rare we were able to connect about 10 families and we feel good about that and we would like to continue to do more. Connections don't have to be only within the state. They can be international. So yes, definitely refer them to us. >> You all know that there are three registries, one is the NCDB deaf blind child count, the Usher syndrome coalition which is exclusively for individuals with Usher syndrome and is international, and then of course HKNC has an Usher registry for anyone who is deaf blind there any cause or etiology in the United States. Another thing that maybe people feel if they register for one they are automatically put into another and I just want to remind everyone that there is no dialogue, automatic dialogue, between the children's registry and either of the other registries. All that information is protected by confidentiality. We are all kind of on our own trying to chalk it up into each of the little community so we can get people out there and identify. The National Usher Syndrome Coalition We realize, and we have met many adults. I went around the country this past summer to various conferences and renewed acquaintances with some of the adults I have worked with years ago at HKNC. Some say I am not interested in registering. I am fine. I have a life and I am working and I am living a full life. I don't need to identify myself formally. We totally respect that. Others say I am not looking for a cure. I am fully blind or profoundly deaf and I am okay. I am not interested in that and I have moved on. Totally respect that. Our goal is to support and matchup and mentor and provide information and provide that bridge so people can make informed choices. >> Nancy, this is Robin. I just do want to mention if anyone is on the phone only, and they have a question or comment, you can use the star and the 62 unmuted or mute your phone if you want to go back on mute. If somebody has a question that is in the room that doesn't want to type it into the chat pod, you can use*six as well. >> While you are on muting, this is Nancy again. I am curious as to any -- anyone's reactions to the numbers that I mentioned today, the thousands and thousands of numbers. I was quite frankly shocked. In light of what Cindy just said about Arizona, I guess I am not surprised, although Cindy, the screening was typically done for -- in schools for the deaf. With that how Arizona worked at? She is typing in the chat box. >> We have a few people typing. That is great. We will wait to see who's gets posted first. >> Nancy, Mrs. Gail. This is Gail. I am wondering if you can talk at all about whatever happened with Kimberling genetic, the Usher screening with -- it moved from sort of being functional all the time from swabbing the insides of people's mouth and sending it off to the Nordic countries for genetic testing. That all sort of fell off the map, so I wondered if you have any current information or can you update us on what happened with that? >> This is Nancy. In my last few years at Helen Keller we were participating in a national history study with the national eye Institute and [Indiscernible]. We were recruiting adult with Usher syndrome who came to the center and one of the questions that inevitably came up was about, I already did this and I never got the result. What I have come to understand is there are studies that are done that are purely for research purposes, and maybe were never intended the results to go back to the individual. Then there are studies that were done with the results are promised back to the individual. So to the best of my understanding, and I don't want to speak on behalf of Doctor Kimberling who is not here, my understanding was that those test, the genetic tests, were done as part of research that was, although we all thought it was coming back to the person, that it was not that type of research. So it seems to have been a big misunderstanding and that is all I know about it. >> A lot of people have gone through the genetic testing then again and that is why we are pushing for and encouraging the unraveling USH said individuals have their Usher syndrome testing just for themselves. >> Thank you. >> You are welcome. >> It was asked if we have a handout with all the link for us to give families and colleagues. Robin, I think when you post the presentation, I have all of the hyperlinks in the PowerPoint. Will they be active when you save it and posted? >> Yes. We can make those active. We will be posting it as a PDF and that will be available, and those should be active links. It will be the full presentation. It won't be just a selection of those particular link pages. Yes. >> Great. >> We have a question, is the registry open to Canadians? Yes. Please spread the word. We have individuals from 52 countries currently in the USH trust registry so we welcome people. What is interesting I have met several families who have moved from Canada to the United States with their children so their children could get better services here. I don't know if it was due to the location. I know Canada usually has terrific services with intervenors, etc., but there are several Canadian families here in the state. I have communicated with people from Estonia and Singapore and we were on a call this morning with France and it is truly international so please do register with us. >> Mark commented, Nancy, I have been doing some data mining on the newly identified individuals with Helen Keller National Center on the deaf blind child count. I will add this information into the form blog post we wrote for this webinar. That would be great. Mark did me a favor and went back five years analyzing all the numbers that you have collected from 2010 to 2015 on kids with Usher and it was really interesting. So if we could keep that on the radar, I think that would be a very nice resource to have. Thank you, Mark. >> I have a post from Megan. My two-year-old was diagnosed with to a when she was [Indiscernible] old she has current to mild and some light sensitivity. We have no experience with this and no history. What can we do to help her communicate better? She also is speech delayed. >> All I will say, Megan, is you are in the right place. You are on the phone with experts, people who have experience with children and communication. So I see that Lisa is already responding by have you tried baby AFL. I use it with both my girls and it has been a tremendous help. I will say to you, Megan, if we can get her information and connect her with her state deaf blind project, what would be the best way to connect Megan into the NCDB family and, Megan, also, please reach out to the coalition and we would love to get you connected with other families of kids with to a -- 2 a. >> Are you connected to your state deaf blind project was asked as well. There is some conversation between Megan and Lisa about communication. When Doctor Kimberly did the study here in Oregon we found eight out of the sample of 100. That would take the number up a lot if we could find approximately the same number for every 100 children who are deaf or hard of hearing but we were not able to actually connect with those families or children. There was a breakdown in communication. So the 8% or 10% that I was quoting before, that was actually from Kimberling so it's good to know what actually happened and someone was [Indiscernible]. I don't know where those kids are now. Cindy Robinson just asked Mark to clarify when you say 75% on the count of Usher type I do you mean of those with Usher? You don't mean all of the 8000 to 10,000 kids identified as deaf blind, correct? >> I will say and marks the half that 75% of the 295 kids in the count of Usher syndrome type I. Looking at the numbers he gave me, and out of 352, and 2015, 260 had Usher type I. I am impressed that there were 10 kids identified with type III because of the vision and hearing loss so that's great. >> Mark said yes of those 75% [Indiscernible-low volume]. >> Doctor Kimberling worked with were gone and we were never said back the connection to those families and children and these were all children, not adults. >> That is the sad part and the good part is we are here and we are starting with dialogue again. My email is and that O'Donnell at Usher [Indiscernible].org and I would love to hear from anyone and everyone who has questions about this who would like to register your child who wants to know more about information that we have. We would love to get everyone registered and to make sure that every child is getting the services and what they need for the education system as well. >> Gail Leslie posted, I don't know if anyone is here from the Texas deaf blind project but the Usher screening , there is found in nosh -- a number of additional children. Again cut it was a few years back and I know they developed new supports within the project and I don't know how their identification efforts have continued. Is anyone from Texas on the call that can respond to that? >> I don't see anyone typing. This slide has all of our contact information. The registry link is there our website for the coalition is there as well and IRD gave my email address and I want to make sure that is in the hard transcription correctly so if we can get that n.odonnell@usher-syndrome.org . The director is Krista and you can email her there as well and then a well-known fact is that our board chair and founder, Mark Dunning is the parent of an 18-year-old daughter has Usher syndrome. It was through his frustration and also his interest in finding solutions for Bella that the Usher syndrome coalition founded. He is the one who reached out to try to find where are the researchers working on this and he was the one who was told by researchers we are here but we can't find the community. So thank you to Mark for all of his work on this and Maura who is the vice chair of our board a person with Usher syndrome type II letter a , and accomplished advocate with a long career on the Hill in Washington DC. Thank you so much. I see someone else is typing. Thank you. It has been my absolute pleasure to be back with everyone old friends and new and I hope this discussion keeps going on and on. Thank you so much. >> Thank you, Nancy. >> Thank you, Robin. We do have a few minutes to go. >> We will leave the chat pod open if people want to put any more questions in the chat pod that the phone line will be terminated at this point in time. >> Okay. Again, thank you so much. Take care.