International MPS Awareness Day and Join the Search Q. What is International MPS Awareness Day? International MPS Awareness Day is a day for us to bring together individuals with MPS and related diseases, their families and medical professionals to celebrate and remember individuals with mucopolysaccharidoses (MPS) and related diseases. It is also a day to educate medical professionals and the general public, and to promote the early detection and diagnosis of these diseases. In commemorating International MPS Awareness Day, our goals are to: Celebrate the gift of life with those who suffer from MPS and related diseases. Remember the ones we have lost from MPS diseases. Recognize the physicians and scientists who are dedicated to finding a cure for MPS and related diseases. Be thankful for the strength and support we both receive in our community. Renew friendships with other MPS families and help connect families around the country. Q. What is the history of International MPS Awareness Day? MPS Awareness Day was first celebrated in 2003. It received the Senate resolution in 2005, 2006, 2007 and we hope to receive one in 2008.  We received House resolution in 2006. In 2007, it was amended to International MPS Awareness day and the date was changed from February 25 to May 15 so that we can celebrate in unison with other MPS sister organizations around the world. Q. What is Join the Search? Join the Search for Patients with MPS is a nationwide campaign launched by the National MPS Society that urges parents, physicians and the public to help identify children with MPS diseases in order to drive earlier diagnosis and to ensure optimal disease management. Physicians and other healthcare providers who care for children during their path to diagnosis are being asked to take a pledge to search for patients with MPS. 2008 International MPS Awareness Day Q. What is the National MPS Society doing to celebrate International MPS Awareness Day in 2008? The National MPS Society is joining together with its pharmaceutical partners, BioMarin, Genzyme and Shire Human Genetic Therapies (HGT) to educate the general public about the importance of diagnosing and treating the seven MPS diseases. This year, we are doing two things to commemorate International MPS Awareness Day: To encourage nationwide celebration of the event amongst the MPS community of family and friends, the Society is sending special, limited edition kites to known MPS families and treating physicians across the U.S. Recipients can decorate the kites as they'd like and join us in flying them at our live celebration events in Oakland, CA and Raleigh, NC, or they can fly them on their own. On May 15, 2008, there will be two celebration events at the Children's Hospital Oakland Research Institute in Oakland, CA, and at the North Carolina General Assembly Legislative Building in Raleigh, NC. Events information Children's Hospital Oakland Research Institute (CHORI), Oakland, CA Time: 10:30 a.m. – 12:30 p.m. PDT Location: Children's Hospital Oakland Research Institute Library 5700 Martin Luther King Jr. Way Oakland, CA 94609 Local contact: Jasmine Chng, jchng@waggeneredstrom.com North Carolina General Assembly Legislative Building, Raleigh, NC Time: 10 a.m. – 12 p.m. EDT Halifax Mall (located just outside the building) 16 West Jones Street Raleigh, NC 27601 Local contact: Amy Petty amyp@waggeneredstrom.com  Q. How can I participate? To receive an invitation to the events or to request a limited edition kite please email info@mpssociety.com. Pease note that there are limited kites available and we can only provide one kite per family to ensure there are enough kites for everyone. Q. How do I send an e-card? Three unique e-cards are available to send to your family and friends.  Two cards can be personalized with your own photo and you can include a message with each card. Q. What can I do as a person with MPS or a family member? Everyone is invited to attend one of the live celebration events in Oakland, CA or Raleigh, NC. The National MPS Society recognizes that not everyone will be able to attend one of the live celebration events. If you are unable to make it to an event, we encourage you to decorate your kite, take a picture of it and share it with the rest of the community by sending it to laurie@mpssociety.com. We will be creating an online photo album to share everyone's pictures. You may also want to plan your own event with other MPS families in your area, or in partnership with your treatment center, or reach out to your local media to educate them on your family's story and the importance in diagnosing and treating MPS diseases. Q. What can I do as a healthcare provider? There are many more patients that have yet to be diagnosed. The best way you can help us is to read through the signs and symptoms information and be on the lookout for these undiagnosed patients.  If you suspect that you may have a patient with MPS in your care please get in touch with the National MPS society immediately as early diagnosis is critical in treating MPS diseases.  As a healthcare provider, you can also pledge to Join the Search for Patients with MPS  by signing up here. The pledge includes learning more about MPS by requesting or downloading educational materials, committing to promptly refer suspected patients with MPS to a geneticist or metabolic specialist, or educating colleagues about signs and symptoms in an effort to encourage greater awareness that will hopefully lead to earlier diagnosis. Q. Who can I speak to if I am a journalist or blogger? For all media inquiries, please contact Jasmine Chng (jchng@waggeneredstrom.com) and we can help connect you to the society, partner companies or the participating hospital. National MPS Society Q. What is the National MPS Society? The National MPS Society exists to find cures for MPS and related diseases by working to provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases. Since 1974 the society has supported individuals and families affected with MPS and related diseases. The society is governed by a member-elected volunteer Board of Directors, many of whom are parents of children with MPS, and benefits from the expertise of a Scientific Advisory Board, comprised of world-class physicians, researchers and medical professionals throughout the world. Q. What can I do to support the MPS Society? The National MPS Society is not a government agency and relies on the generosity of supporters to fund programs for the thousands of children, adults and families who cope with MPS. To learn how you can make a donation online or by mail, please visit the donation website. Mucopolysaccharidoses (MPS) Q. What is MPS? Mucopolysaccharidoses (mew-ko-poly-sak-a-ride-dos-es), commonly referred to as MPS, are a group of seven, often overlooked genetic disease. Early diagnosis is critical to minimizing life-threatening complications and to improving the lives of children with MPS. Yet, diagnosis is often delayed because initial symptoms, such as recurrent ear infections, delayed growth or hernias may be perceived as common medical problems that children of similar age experience. Patients with MPS lack or are deficient in a specific enzyme required for normal cell metabolism. In a healthy person, the body uses these enzymes to break down and recycle cellular waste - in individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. Q. How common is MPS disease? MPS diseases occur in approximately one out of every 25,000 live births in the United States. Q. How many MPS diseases are there? There are seven MPS diseases, MPS I (Hurler-Scheie syndrome); MPS II (Hunter syndrome); MPS III (Sanfilippo syndrome); MPS IV (Morquio syndrome); MPS VI (Maroteaux-Lamy syndrome); MPS VII (Sly syndrome) and MPS IX. To download the full fact sheets for each disease, please visit the disease home page here. Q. What are the symptoms? Symptoms of the diseases may vary from one syndrome to another although there are many similarities. Affected individuals often have mental retardation, cloudy corneas, short stature, stiff joints, , speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span. Signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials. Unless there is a known family history that would encourage early genetic testing, diagnoses are often missed for years, as the diseases are so rare and early symptoms can be mistaken for common childhood ailments, such as a cold. Q. Is there cure for MPS diseases? There is no cure, but treatments such as enzyme replacement therapies (or ERTs) are available to treat three of the MPS diseases— MPS I (Hurler, or Hurler-Scheie syndrome), MPS II (Hunter syndrome) and MPS VI (Maroteaux-Lamy syndrome). However, it is devastating to know that there are still many families around the country who are unaware that treatment, and in turn, hope, exists. Q. What is enzyme replacement therapy? Enzyme replacement therapy (ERT) is a medical treatment for genetic disorders in which the patient is given the specific enzyme (protein) that is deficient or malfunctioning in their bodies. The missing protein is given intravenously to the patient on a regular basis and is usually this is done by giving the patient an intravenous (IV) infusion containing the enzyme. Enzyme replacement therapy does not "treat" the underlying disease, only the symptoms. Q. Where can I find additional information on MPS diseases? Join The Search  MPSVI.com Naglazyme Family Site (MPS VI) MPS 1Dieasease.com Aldurazyme Family Site (MPS I) Hunterpatients.com (MPS II) Elaprase.com (MPS II)