As a small nonprofit 501(c)(3) organization, AXYS relies primarily on the generosity of donors who provide the necessary financial support and volunteers who help with the countless tasks needing attention on a daily basis. Our finances are always open for inspection. Below are links to relevant documents that detail our financial activity over the years.
View our Guidestar profile for more information.
2014 990-EZ and FASB Functional Categories Detail
Email address for XXYY Syndrome support: xxyyprojectsupport@genetic.org.
AXYS Helpline: 1-267-338-4262
In support of our mission, the XXYY Project raises funds to further research on 48,XXYY Syndrome. Recently, we assisted researchers at Emory University, an AXYS Clinic and Research Consortium (ACRC) member, by wholly funding the following study: “The Relationship of Physical Function and Psychosocial Health on Quality of Life in Individuals with 48,XXYY.” Members have participated and the paper will be made available when published. Thanks to all who participated and made this a successful investment.
Please donate to the Ryan Scovell Memorial Research Fund to ensure we are prepared to help fund future research requests.
On behalf of the XXYY Project, Emory University, and the entire ACRC research community, thank you for your past support!
47,XYY affects about 1 in 1,000 males. Adding to its relative rarity, it is diagnosed in only about 10 percent of cases, often during prenatal testing.
Many with 47,XYY have no symptoms at all. Others can demonstrate significant developmental and behavioral issues.
47,XYY was sometimes referred to as “Jacob’s syndrome.”
47,XYY may produce a wide array of symptoms, although most people with the extra Y chromosome it entails will exhibit only some, but not all, of the following:
When children show a history of symptoms such as speech delay, learning disability, or autism, parents should strongly consider genetic testing to determine if the cause is a sex chromosome aneuploidy (SCA). Testing for 47,XYY involves a specialized blood test, either a “karyotyping” or a “microarray.” Health care professionals are often unfamiliar with the developmental and cognitive deficits associated with X&Y variations.
Frequently Asked Questions about 47,XYY
Downloadable Brochure- About 47,XYY | Versión en español
Trifold brochure printing instructions: Be sure you are printing in two-sided (duplex) mode, and to select the “Flip on Short Edge” or “Short-Edge Binding” option, if available in the Print dialog box or any associated dialog boxes.
Thanks to the generosity of the book’s author, Virginia Isaacs Cover, MSW, AXYS is pleased to make this book available to the X and Y variation community, in its entirety, at no cost. Please feel free to download and/or print it for your personal use. Those wishing to purchase a soft-bound copy can do so at Amazon or Kindle. All proceeds from the sale of this book benefit the GALAXY registry of X and Y variations.
Spanish: “A Guide for Families and Individuals Affected by X and Y Chromosome Variations”
What is XYY? Meet Steve and find out.
Visit our CafePress store to support AXYS and raise awareness of 47,XYY.
Typically, a female has 2 X chromosomes. 1 in 1,000 females has an extra X. This is called Trisomy X. It is also written as 47,XXX.
As you can see in the adjoining photo collage of girls and young women with 47,XXX, the condition is not characterized by any prominent physical features. Children and adults with Trisomy X do not look different than their peers, though they may be somewhat taller. Some have a curved little finger, epicanthal eyelid fold (skin curving slightly down toward the inner eye), and flat feet. Some have very little in the way of symptoms, others have significant developmental, medical, and psychological issues.
47,XXX may produce the following additional symptoms, although most affected individuals will have only some of them:
Because symptoms are subtle and vary widely from one person to the next, only 10 percent of those with Trisomy X are diagnosed during their lifetimes. More are being identified prenatally due to maternal testing (amniocentesis, CVS, or non-invasive cell free DNA blood test).
Adults may learn they have an extra X chromosome during infertility testing or during non-invasive prenatal testing when the mother’s extra X may be detected during cell-free DNA blood work.
One of the goals of AXYS is to raise awareness of the developmental, medical and psychosocial issues that may accompany 47,XXX. Children with symptoms such as speech delay, learning disability, developmental delays or genitourinary malformations should be followed up with genetic testing to determine if the cause is an X and Y variation.
Please visit our Prenatal Testing Page for more information regarding genetic testing: https://genetic.org/im-pregnant-genetic-testing-questions/prenatal-testing/
Frequently Asked Questions about 47,XXX
Downloadable Brochure- About 47,XXX (Trisomy X) | Versión en español
Trifold brochure printing instructions: Be sure you are printing in two-sided (duplex) mode, and to select the “Flip on Short Edge” or “Short-Edge Binding” option, if available in the Print dialog box or any associated dialog boxes.
Thanks to the generosity of the book’s author, Virginia Isaacs Cover, MSW, AXYS is pleased to make this book available to the X and Y variation community, in its entirety, at no cost. Please feel free to download and/or print it for your personal use. Those wishing to purchase a soft-bound copy can do so at Amazon or Kindle. All proceeds from the sale of this book benefit the GALAXY registry of X and Y variations.
Spanish: “A Guide for Families and Individuals Affected by X and Y Chromosome Variations”
Trisomy X article by Nicole Tartaglia, et al | Spanish language version
Expanding the Phenotype of Triple X Syndrome by Nicole Tartaglia, et al
Talking to your daughter: “My Guide to Trisomy X”
Self Management Traffic Light Resource
This resource was created by an adult with Trisomy X. We’re grateful they shared it with us. We hope you find it helpful.
Trisomy X/Triple X/XXX Global Support Group
Trisomy X- A Group Just For Us
Contactgroep Triple-X Syndroom (The Netherlands)
Visit our CafePress store to support AXYS and raise awareness of Trisomy X.
47,XXY (Klinefelter syndrome) is the most common of the X and Y variations, occurring in approximately 1 out of every 600 male births.
One of the challenges of 47,XXY is that it is not characterized by any prominent physical features. This is thought to be one of the reasons that an estimated 60 to 75% of individuals with 47,XXY will remain undiagnosed throughout their lifetimes. Some people with 47,XXY may have subtle physical differences may including slightly taller stature, a curved little finger, small testes in adults, difficulty straightening out the elbows (“radioulnar synostosis”), flat feet, and a small depression in the chest.
47,XXY may produce the following additional symptoms,
although most people with the condition will demonstrate only some, but not all, of them:
This genetic signature is also called Klinefelter syndrome because it was first described in 1942 by Dr. Harry Klinefelter, an endocrinologist at Massachusetts General Hospital. He published a case study of nine adult men with a common set of symptoms involving hypogonadism. At the time, chromosomes had not yet been discovered. That occurred in 1956, when scientists confirmed that humans typically have 23 pairs of chromosomes, including two sex chromosomes. In 1959, scientists identified an extra X chromosome as the genetic marker for Klinefelter syndrome, and gave it the genetic signature of 47,XXY.
Some individuals are found to have 47,XXY before birth due to maternal testing (via amniocentesis, CVS, or a non-invasive cell free DNA blood test). Another point at which 47,XXY, may be detected in an affected individual is during infertility testing in adulthood.
AXYS encourages families to be aware of the developmental, medical and psychosocial issues that may accompany 47,XXY. When children exhibit a history of symptoms such as speech delay, learning disability, autism, or delayed puberty, parents may wish to ask for genetic testing to determine whether the cause is an X or Y variation
Testing for 47,XXY involves a specialized blood test, either a “karyotyping” or a “microarray.” Health care professionals may be familiar with the endocrine features of Klinefelter syndrome, but not the developmental and cognitive difficulties associated with it.
Frequently Asked Questions about 47,XXY
Downloadable Brochure: About 47,XXY (Klinefelter syndrome) | Versión en español
Trifold brochure printing instructions: Be sure you are printing in two-sided (duplex) mode, and to select the “Flip on Short Edge” or “Short-Edge Binding” option, if available in the Print dialog box or any associated dialog boxes.
Thanks to the generosity of the book’s author, Virginia Isaacs Cover, MSW, AXYS is pleased to make this book available to the X and Y variation community, in its entirety, at no cost. Please feel free to download and/or print it for your personal use. Those wishing to purchase a soft-bound copy can do so at Amazon or Kindle. All proceeds from the sale of this book benefit the GALAXY registry of X and Y variations.
Spanish: “A Guide for Families and Individuals Affected by X and Y Chromosome Variations”
Click here for an informative Medscape article on Klinefelter syndrome.
Visit our CafePress store to support AXYS and raise awareness of 47,XXY.
AXYS is committed to protecting your privacy and using technology that gives you the most powerful and safe online experience. This Statement of Privacy applies to the AXYS website and governs data collection and usage. By using the AXYS website, you consent to the data practices described in this statement.
AXYS collects personally identifiable information, such as your email address, name, home or work address or telephone number.AXYS also collects anonymous demographic information, which is not unique to you, such as your ZIP code, age, gender, preferences, interests and favorites.
There is also information about your computer hardware and software that is automatically collected by AXYS. This information can include: your IP address, browser type, domain names, access times and referring website addresses. This information is used by AXYS for the operation of the service, to maintain quality of the service, and to provide general statistics regarding use of the AXYS website.
Please keep in mind that if you directly disclose personally identifiable information or personally sensitive data through AXYS public social media groups, this information may be collected and used by others. Note: AXYS does not read any of your private online communications.
AXYS encourages you to review the privacy statements of websites you choose to visit by clicking a link from the AXYS website so that you can understand how those websites collect, use and share your information. AXYS is not responsible for the privacy statements or other content on websites outside of the AXYS website.
AXYS collects and uses your personal information to operate the AXYS website and deliver the services you have requested. AXYS also uses your personally identifiable information to inform you of other products or services available from AXYS and its affiliates. AXYS may also contact you via surveys to conduct research about your opinion of current services or of potential new services that may be offered.
AXYS does not sell, rent or lease its customer lists to third parties. AXYS may, from time to time, contact you on behalf of external business partners about a particular offering that may be of interest to you. In those cases, your unique personally identifiable information (email, name, address, telephone number) is not transferred to the third party. In addition, AXYS may share data with trusted partners to help us perform statistical analysis, send you email or postal mail, provide customer support, or arrange for deliveries. All such third parties are prohibited from using your personal information except to provide these services to AXYS, and they are required to maintain the confidentiality of your information.
AXYS does not use or disclose sensitive personal information, such as race, religion, or political affiliations, without your explicit consent.
AXYS keeps track of the websites and pages our customers visit within AXYS, in order to determine what AXYS services are the most popular. This data is used to deliver customized content and advertising within AXYS to customers whose behavior indicates that they are interested in a particular subject area.
AXYS websites will disclose your personal information, without notice, only if required to do so by law or in the good faith belief that such action is necessary to: (a) conform to the edicts of the law or comply with legal process served on AXYS or the site; (b) protect and defend the rights or property of AXYS; and, (c) act under exigent circumstances to protect the personal safety of users of AXYS, or the public.
The AXYS website use “cookies” to help you personalize your online experience. A cookie is a text file that is placed on your hard disk by a Web page server. Cookies cannot be used to run programs or deliver viruses to your computer. Cookies are uniquely assigned to you, and can only be read by a web server in the domain that issued the cookie to you.
One of the primary purposes of cookies is to provide a convenience feature to save you time. The purpose of a cookie is to tell the web server that you have returned to a specific page. For example, if you personalize AXYS pages, or register with AXYS site or services, a cookie helps AXYS to recall your specific information on subsequent visits. This simplifies the process of recording your personal information, such as billing addresses, shipping addresses, and so on. When you return to the same AXYS website, the information you previously provided can be retrieved, so you can easily use the AXYS features that you customized.
You have the ability to accept or decline cookies. Most browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. If you choose to decline cookies, you may not be able to fully experience the interactive features of the AXYS services or websites you visit.
AXYS secures your personal information from unauthorized access, use or disclosure. AXYS secures the personally identifiable information you provide on computer servers in a controlled, secure environment, protected from unauthorized access, use or disclosure. When personal information (such as a credit card number) is transmitted to other websites, it is protected through the use of encryption, such as the Secure Socket Layer (SSL) protocol.
AXYS will occasionally update this Statement of Privacy to reflect company and customer feedback. AXYS encourages you to periodically review this Statement to be informed of how AXYS is protecting your information.
AXYS welcomes your comments regarding this Statement of Privacy. If you believe that AXYS has not adhered to this Statement, please contact AXYS at info@genetic.org. We will use commercially reasonable efforts to promptly determine and remedy the problem.
Your donations are vital to the support of AXYS’s goals and fund our Help Line, Support Groups, distribution of brochures, creation of clinics and all of our ongoing programs. Visit our Donate Now page to make your gift using a credit or debit card.
If you’d prefer to donate by mail, please download and complete a Donation Form, and then mail it to AXYS with your check, money order, debit or credit card information.
While on our Donate Now page you can use the Donation Frequency drop-down menu to set up recurring giving to AXYS. This budget friendly support is greatly appreciated and helps AXYS to plan ongoing programs. You can also designate your gift to be in honor of or in memory of a loved one.
Please check with the Human Resources department where you work to see if your company can double or even triple your donation to AXYS. We’re happy to help. Write us.
Every member of the AXYS community should have an up-to-date will. We hope you will consider AXYS as one of your beneficiaries. Please consult your attorney or financial planner. For more information, write to us.
AXYS welcomes gifts of stock. Shares can be transferred directly from your broker to AXYS’s brokerage account. Please contact us for more information.
You can amend an existing life insurance policy to name AXYS the beneficiary, or you can donate a policy. You may be able to claim an income tax deduction on the present value of the policy. Please consult your attorney or financial planner.
AXYS is a nonprofit, 501(c)3, tax-exempt organization, tax ID#33-0395993.
Gifts made to AXYS are tax deductible to the extent permitted by law.
Please consult your tax advisor.
