We have a daughter who was diagnosed with the juvenile form of MLD in June of 2011. That is also when we found the MLD Foundation when searching online and attended our first MLD conference. It was at the conference that we met other parents who were so helpful to us by listening to us, answering our questions and sharing their own experiences. The conference provided us with everything we were hoping for, education about the disease, the latest research, friendship and support. The MLD Foundation discussion list has helped us to connect to other families from all over the US and abroad so that we don't feel alone in this challenging journey. We are SO THANKFUL TO THE MLD FOUNDATION and to its founders, DEAN AND TERYN !
When our son was diagnosed with MLD in 2000 we found the MLD Foundation. It was so good to have someone to get information from when dealing with a disease with so little information available at the time. We needed advice and help to navigate our way through this disease. This foundation provides an opportunity for families suffering from such a devastating diagnosis to know that they are not alone, and that there are others that have been through this and can offer a shoulder to lean on, and can understand what they are going through.
Our son has been diagnosed with MLD for nearly 10 years now. This foundation has helped link us to others with this rare disease. We have been able to ask questions of others who have traveled this journey before us, or be a resource to new comers to this deadly disease. It has been a huge help to know you're not alone out there, and to find out what is being done to help with a cure that we hope will be there someday. This organization has been a huge blessing.
We have three children who were diagnosed with the juvenile form of MLD in late 2012. The MLD Foundation was our first stop for information, support, and community. They guided us through different treatment options and the yearly conferences that they hold gave us exactly what we needed in terms of information, education, support, and most of all.... hope.
They are developing more programs to suit the needs of families affected by MLD, and we are so grateful for their leadership and their advocacy.
This is a really great non-profit that devotes itself to the needs of families desperate for answers and support for a rare and cruel disease.
The MLD Foundation has helped me and my family in so many ways ! My daughter Sofija was diagnosed in Sept.2008.
We live in Serbia that is a country which was bombed in 1999. so it was very hard to find some support and understanding, in any way by doctors or friends.Doctor told me that they know about MLD from their books from college.
So everything I wanted to ask ,any question I didnt get response Just words ,, May God help you ,, there is no medicine,don't spend money on some alternative medicine.In This Foundation I find answers on all my questions,now I'm the person who teach, tell doctors about this horrible disease,and tell them a news about all kinds of research that are going on in the World about this disease.
So Thank You That you exist .
Our daughter was diagnosed with MLD in March 2012. I´m so thankful, that I found this group although we live in Germany. It is such a great resource of knowledge and understanding of MLD.
My daughter was diagnosed with MLD in 2011. The MLD Foundation has helped me connect with other families so that I know I am not alone in this journey.
As many will undoubtedly say, "This is a group no one wants to be a part of, but we are very, very grateful for it's existence." With a disease so rare, it is critical that info/knowledge/experience be "housed" in one area. MLD Foundation is our clearing house for care, therapies, support. This group bridges the miles and spans the concerns of all members. EVERYONE has a voice. There are so many inspirational and supportive souls, some who post frequently, and some who choose to be less involved, but always there when needed. Teryn and Dean, MLD parents themselves, are selfless, compassionate, forward-thinking and proactive leaders. When our 21 year old son was dx in 2013, we were told to go home and take care of him. Our story is turning out dramatically different from that 2013 advice. This group has walked us through it all. We feel blessed and honored to be a part of it.
The MLD Foundation is an amazing group of people fighting the same unfortunate journey. MLD is such a rare disease; many healthcare professionals do not have the knowledge to help answer your questions and deal with this cruel disease. The MLD family is there for you every step of the way. We couldn't have asked for a more supportive group of individuals to help us everyday. Thank you MLD Foundation!
The MLD Foundation has helped me and my family in so many ways! Our child was diagnosed in February 2014 and we were told to take him home and keep him comfortable. We were not given a support group or any valuable caregiving instructions. When I found this organization it has become an extension of our family. The conference we attended in the summer was so helpful and full of information. The family list serve allows us rare folks a chance to connect and vent and advise and help! I am forever grateful to the MLD Foundation and this community!
This Foundation has been a very important resource to us, both individually and as a family. At the time of my son's diagnosis it was our main source of information. During his illness the foundations discussion list was a source of support, advice and information on everything from day to day care issues to medical issues that we could bring to our medical team to help in our sons care as the medical team had no experience with this rare disease. Even now, since our sons passing, the MLD Foundation as been a support to us as we navigate life with our little boy in our midst. I am ever grateful for the work this foundation does for all MLD affected families across the globe- bringing otherwise isolated families together to gain comfort and support from far away but close at heart families.
The MLD Foundation has helped me and my family in so many ways. If I have a question about MLD I can post it through the email discussion board and someone replies almost instantly. The MLD Foundation has always been there for emotional support as well as providing updates and resources for MLD. This year at the upcoming MLD Conference a Webinar is being offered for those that cannot attend.
Tell your story here and help others understand this charity Teryn sent me an email shortly after my son was diagnosed with MLD. She and her husband, Dean introduced me to an amazing discussion board that is tailored to the families around the world that have children, family members, and spouses with MLD. This organization has helped so many people in so many ways. The MLD Foundation has helped me through many trying times and I am grateful that they have made this available to all of us. Rhonda McMinn ( Tyler, 6)
MLD Foundation help raise awareness about MLD, and also support those suffering or are caring for a loved one with MLD. It is a great support system.
Dean & Teryn founders of The MLD Foundation have children that have & do suffer from this disease. They know how difficult it is to get information on how to help people affected with MLD. In an effort to help others not have to go through what they have been through they started this foundation in order to help others have access to information. They have many contacts in Medicine & Research that has been very valuable to many people. The MLD disscussion group which they started has been an invaluable sorce of information for me & many, many others. They work tirelessly and effectively and helping other families affected with MLD & they have meant many of them. This foundation offers support most of us can not get elsewhere even in the medical community it is difficult to find doctors that have even heard of MLD and most of them don't know what kind of treatments are needed. I have had 3 children with MLD and I am so thankful for the MLD foundation they have been a great source of help, knowledge, & comfort to me and I know many, many others.
This group has made me feel supported and I no longer felt all alone in my journey with this disease. This online connection has been a powerful resource for a rare disease that has devastating effects on it's victims and families. Resources and information is crucial in diseases such as this one and the MLD foundation has done just that.
My family has suffered through two diagnoses of MLD. This site has been an invaluable resource for our families. This site covers everything from Support Groups and Learning Libraries, to current Global Research and Clinical Trials. It truly is a One-Stop for everything MLD!
My daughter Cheyenne was diagnosed with MLD 2 years ago. What a helpless, hopeless feeling that was! Thank the heavens I found the MLD foundation to turn to. They have been a source of hope, answers, and just knowing that youre not alone in this battle is worth the world!
I have nothing but great things to say about the MLD Foundation. They were warm and receptive right off the bat. My son was diagnosed with MLD in November 2008 after having an abnormal gait. He was tested twice to confirm the MLD diagnosis. Soon after my son was diagnosed, we contacted the MLD Foundation. I had so many questions to ask people in the support group that they offer online for families. All my questions were answered, and it was nice to get others points of view and hear their stories. The other nice thing that I experienced with the MLD Foundation is that the cofounders, Tery and Dean Suhr, have made it possible for families to get together around the world to meet other families with MLD. I was able to attend the last MLD conference they had last year, and it was so nice to meet them and other families. I no longer felt alone. So, the MLD Foundation is a big source of support in my life and I am grateful to them.
My son has adult-onset MLD, the rarest form of this genetic disease. After struggling alone for four years with mis-diagnosis and no-one else in the UK to help us we finally found the MLD Foundation. They have given us unwavering support and help throughout our journey. Our son's MLD has been halted/slowed by a stem cell transplant from our carrier son. When we went through major traumas when the transplant broke down and knew that whenever we used the e-mail forum there would be somebody there to support us and offer kind thoughts and advice. As a parent of an adult, our story is somewhat different from other families. Our son is now 38 and 14 years post transplant. We still struggle and know that we have the MLD Foundation there to offer any support we may need. Without the MLD Foundation we would still be out there, feeling alone and lost. The MLD Foundation have given us valuable information on MLD helped us make our way through Scott's troubled life. We think the MLD Foundation deserves recognition for the way it helps new families through the first few traumatic months after diagnosis - one of the most difficult periodsTh. MLD Foundation is a "family" who care about us and our children.
'TAKE YOUR CHILD HOME AND KEEP THEM COMFORTABLE' THERE IS NO TREATMENT - THERE IS NO CURE. The MLD Foundation has given us a 'place' and a sounding board...to grieve...to ask questions even the 'best' doctors do not have answers for...they are a grieving family having TWO affected children - one who is in heaven now and one still battling this horrid disease - and have started a foundation to help all of us come together and try to make the best life for our affected kids. MLD may be 'rare'...but awareness and love are steps to helping our kids - and the MLD Foundation provides BOTH and more.
Our son has MLD and the foundation has been an amazing support through the different stages of our sons illness. We have been able to ask questions to families all over the world, and in return have also offered our help to people we have never met but we feel we know them because of the bond the MLD community has. There is no judgement, but there is information that alot of the doctors can't give us due to the rareness of MLD so being able to communicate with others going through the same problems in priceless.