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On the other hand you may find you receive support and compassion from family members, including those who you may not have been close to before this diagnosis. Sometimes these events can bring people together in their quest for treatment, information, and hope.

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you can send to family member informing them of this diagnosis. It is in Word format, and you can download it and alter it to suit your situation. You can send it anonymously or sign your name. We hope this assists you in dealing with the delicate nature of explaining this complex information to family members, some of whom you may not even know.

It can be difficult to inform relatives about their genetic risk, but it is not your responsibility to provide genetic counseling or ensure that your family members seek testing.

Complex situations can arise when family members do not relay this information to other “at-risk” relatives. Genetic counselors can assist you in identifying at-risk relatives in your family tree and can work with you to develop a strategy for approaching the subject of diagnostic or carrier testing.

As you consider your approach to informing family members, please feel free to call the National Fragile X Foundation at 800-688-8765. To find a genetic counselor in your area, visit: BalaMasa Womens Dress Buckle Zipper Suede Boots ABL10208 Gray UPpW37x

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There will be many people whom you will want to tell about Fragile X syndrome (FXS). Your doctor, your friends and family, young students at your child’s school – and you will want to be able to describe it in a way they will each understand.

Your reasons for telling others will be as varied as the situations in which you find yourself: You want other children to accept your child; your child might be having a behavior meltdown in public (not always the easiest time to talk to someone); your child may be flapping his arms or repeating a line from his favorite television show over and over again; other people may be staring at your child; or you just may want to “spread the word.”

Start by gaining an understanding of FXS. Some of the information is very complicated, so it may take some time for you to come up with terminology that others will understand. Use our website to research the particular information you are seeking. What you tell people will vary for each person and for each situation.

This could be emotion-packed so a good portion of what you say will depend on where they are in terms of understanding the diagnosis and what they are ready to hear. Start by keeping it very simple and then give them more information as they ask or you think they are ready. Referring them to the Steve Madden Mens Rothman Oxford Tan cDJmEEeTb
is always a good idea. If the questions get too complicated, especially around the genetic aspect, have them call the NFXF and talk to our genetic specialist.

These conversations will most likely be very similar to what you tell your family, only without the complex emotions attached.

Whether it’s your child’s doctor or your own, you might start with how FXS affects your child and then direct the doctor to our website for more information. Depending on the current issues your child is facing (e.g., sensory integration), you may also want to bring a published article about the topic to the appointment and give it to the doctor.

If you are going to talk to young children, keep it short and simple. If you are not sure at what level to talk, ask one of your friends or neighbors who have a child in the class. If you know a typical child your child’s age, ask her what she would like to know about FXS. Bring a favorite toy of your child’s so the other children see that he is interested in the same things as they are.

You might consider sending a letter to the parents of the children in your child’s class. Not only will it educate them, but you can give them ideas on how and what to talk about with their own children. As the children get older, gear your talk to what you think they are ready for; you will get a good idea of this by the questions they ask.

Holly Usrey-Roos shares the value of talking with your child’s classmates in her post Finding Hope in My Children . Also included is a podcast and outline that is designed to give you the skills and confidence to present the topic of FXS to your child’s classmates.

You will want to keep this simple unless they ask you questions. Know that if you do not feel like talking, you can give them something written. The NFXF has created a card to hand out in such situations. It is very simple, business-card size, and it directs them to our website for more information. You might also want to use this card in other situations too because of the website reference. Contact the NFXF to get some.

Sometimes you will not have a choice – at the grocery store, for example. At school, use your judgment or ask your child if he wants to be there. He might want to stay in the room when he is in kindergarten but might not when he is in the first grade.

And when others stare? OK, OK, I have to admit, I have said, “What are you looking at?” on more than one occasion, but it was to older children (who should have known better), and their parents were not within earshot. I cannot say I was proud of myself, stooping to this level, but it did feel kind of good at the time…

My son is a young adult, and as you can imagine, a lot of people have stared at him over the years. I mean, some people have not been able to take their eyes off of him. My daughter and I generally chuckle at these people now because most likely, they have all been told not to stare, but the reality is, my son’s behavior is so unusual – a 6-foot-tall person jumping up and down flapping his arms – that I would probably stare too.

Actually I do stare because I am trying to figure out how he moves like that without dislocating something. Sometimes I smile at the person and say, “He’s really excited.” Sometimes they nod their head and smile back, but they almost always keep staring.

This can be a tricky topic, but I am confident you will find what works for you. For more information or ideas on what to say, CANTER Womens Classic Open Toe Ankle Strap Stiletto High Heel Sandals Black Flower Leatherette BoEqvZqAm8
. We’ll have fun coming up with something.


Jayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.

Feel free to share your stories with me at treatment@fragilex.org . I’d love to hear from you.

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I hear a version of the statement in the headline above virtually every week. Sometimes it is, “Can you find me a doctor who has at least heard the words ‘Fragile X?’”

“In our research we develop the software, tools and methods for digital musicology, combining computational analysis and cultural informatics to further the exploration and understanding of music collections. The Great 78 Project is a exciting new resource, since it not only archives a large corpus of important historical music which would otherwise be lost, but does so digitally, enabling us to apply the latest in computing techniques to the study of its high quality audio files. Digital Musicology thrives on large-scale audio collections, and improving our computational methods is best achieved when the community has free and unfettered access to the data, enabling us to collaboratively test and refine our approaches.” — Dr. Kevin Page , Transforming Musicology project, University of Oxford e-Research Centre

Dr. Kevin Page

Internet Archive Special Collections Room

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The Internet Archive is preserving physical 78rpm discs and digitizing them to ensure the survival of their content. Accessioning BalaMasa Womens LaceUp Bandage LowHeels Patent Leather PumpsShoes Blue EaPO0
means working with collectors and archives to understand and record the history of the collection and physical requirements. The Internet Archive will either pack ourselves or carefully instruct donors how to pack the materials for transportation. Received in a variety of conditions and in locations all over the world, they are often re-sleeved and packaged carefully for shipping to the Internet Archive’s physical archive .

Weprotect sleeved 78s withclear plastic archival 10″ outer sleeves, and unsleeved 78s are placed in clean paper sleeves. We wrap every five 78s in bubble wrap, then place4 packages of bubble-wrapped 78s into awhite clamshell box with padded with even more bubble wrap. We place4 white clamshell boxes into each 13″ square box with extra padding around the boxes and secure with tape. For transportation and long term storage, the 13″ boxes are stored on pallets in 3 layers with 9 boxes per layer.

The Internet Archive has experienced very little breakage with this system. Read more on our handling 78rpm discs.

Digitization is done by the George Blood, LP company on special turntables.

Because 78s are so fragile, the best way to make the content available for research and discovery is to digitize them before packing them away for long term storage.

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Their processes include handling the physical discs with care, photographing the discs, keying the metadata from the disc, and creating the cleanest possible recordings with four different styli. After digitization, the files are uploaded to archive.org and the discs are carefully packed and transported to the Internet Archive’s physical archive for long term storage and preservation.

We impose a rule that honest clients will never spend (only exit) an output that’s received after data withholding or an invalid tx.

When someone exits via our game, they reveal a signed transaction that spends some inputs. If all of these inputs were created before withholding, then there’s no issue. If any input was created after withholding, then it must have priority of at most “after withholding”.

Yeah, this scheme requires data availability to work. But with availability the exits should be relatively straightforward, as anyone can challenge false withdrawals and therefore save their coins from being stolen.

Seems to me a major problem with Plasma is that delegated exits when data is not available must be trusted. I don’t think confirmation signatures are the big problem…

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The exit game specified is specifically designed not to require availability.

The problem is how you define a competitor transaction. Suppose a transaction is in an unavailable block which withdraws more money than it should and references certain objects, which are distinct from mune. I have no idea whether those objects are valid or not, so I can’t challenge. This means someone can run away with the funds with an invalid transaction in an unavailable block.

In your definition of the priority of a transaction, there is nothing to state that the transaction must come before mine, unless it is specifically ordered by block id as with the old Plasma MVP.

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I have no idea whether those objects are valid or not, so I can’t challenge. This means someone can run away with the funds with an invalid transaction in an unavailable block.

Correct, these transactions will still be able to exit. Our game just guarantees that any transactions stemming from inputs before an invalid tx or withholding will be able to exit before any transaction stemming from the “out of nowhere” output.

We’re basically not changing any of the assumptions of the original MVP, except that we remove the need for confirmation signatures.

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unless it is specifically ordered by block id as with the old Plasma MVP.

It’s still ordered by (block #, txindex) except we look at the (block #, txindex) of the youngest input to an output instead of the output itself.

I see, nice work. Have you done any work on exits?


Have you done any work on exits?

What sort of work do you mean?

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