Links to Rare Disease Advocacy Groups
Since UBE2A is so rare/new, there isn't much information that doctors/geneticists can give us. In our case, we were told that our geneticist team would be now learning from Abram so that we can help pave the way for other families. The world of the unknown can be a bit daunting to travel but I feel that for all that Abram has gone through in his short life, if his journey can help others - then by all means let's blaze that path to make it easier for those who come after us.
I feel the websites below are good for learning more about genetics, how to deal with rare disease in general, and how to partner with other families to advocate and get that "community" that we all need when it comes to our children having a rare genetic disorder.
Many of these websites enable you to join and share your child's medical information in hopes of finding other families who has the same genetic condition. Many people may cringe at the thought of sharing such vital personal information but when there are less than 50 reported cases of UBE2A in medical literature, you want to be able to find the families that can help you the most - the ones who are LIVING it.
I feel the websites below are good for learning more about genetics, how to deal with rare disease in general, and how to partner with other families to advocate and get that "community" that we all need when it comes to our children having a rare genetic disorder.
Many of these websites enable you to join and share your child's medical information in hopes of finding other families who has the same genetic condition. Many people may cringe at the thought of sharing such vital personal information but when there are less than 50 reported cases of UBE2A in medical literature, you want to be able to find the families that can help you the most - the ones who are LIVING it.
Links to Resources for Children with Disabilities in IOWA
ASK Resource Center
ASK Resource is non-profit organization that literally changed my life in my early days of advocacy when I attended their Parents as Presenters program. They help families navigate IEPS, help them learn to advocate with doctors and specialists and empower families by giving them the tools that they need or properly advocate for their child/children and get the supports they need to live their best life!
Children at Home Program
The Children At Home Program is a great resource for families who need to secure services and supports for their child at home. You can apply for a grant for equipment, therapy, inclusion activities, parent/caregiver education, personal care, respite care, medical expenses, transportation and nutrition.
Childserve
Childserve is a wonderful place where you can get nearly all of your child's services under ONE roof. Abram has been going there every single week since 2013 for services like occupational therapy, speech therapy, physical therapy, MNRI, orthotics, physiatrists, genetics and so much more. On top of everything else, they have a heated therapy pool with family swim times every week for just $4!
Disability Rights Iowa
Disability Rights Iowa is part of a national group of agencies created by Congress in the 1970s to address repeated abuse and neglect of people with disabilities in large institutions. Disability Rights Iowa aims to defend and promote the human and legal rights of Iowans with disabilities and mental illness. We promote safety, opportunity, access, and self-determination for all Iowans.
Early Access
Early Access is Iowa's early intervention system and they played a vital role in getting my son the services he needed well before his first birthday. This enabled him to have occupational therapy and physical therapy in our home each week until he aged out of those services and into preschool. In addition, they helped us learn that my son qualified for a waiver due to his disability and helped guide us on how to get my son the healthcare coverage that he is entitled to.
ASK Resource is non-profit organization that literally changed my life in my early days of advocacy when I attended their Parents as Presenters program. They help families navigate IEPS, help them learn to advocate with doctors and specialists and empower families by giving them the tools that they need or properly advocate for their child/children and get the supports they need to live their best life!
Children at Home Program
The Children At Home Program is a great resource for families who need to secure services and supports for their child at home. You can apply for a grant for equipment, therapy, inclusion activities, parent/caregiver education, personal care, respite care, medical expenses, transportation and nutrition.
Childserve
Childserve is a wonderful place where you can get nearly all of your child's services under ONE roof. Abram has been going there every single week since 2013 for services like occupational therapy, speech therapy, physical therapy, MNRI, orthotics, physiatrists, genetics and so much more. On top of everything else, they have a heated therapy pool with family swim times every week for just $4!
Disability Rights Iowa
Disability Rights Iowa is part of a national group of agencies created by Congress in the 1970s to address repeated abuse and neglect of people with disabilities in large institutions. Disability Rights Iowa aims to defend and promote the human and legal rights of Iowans with disabilities and mental illness. We promote safety, opportunity, access, and self-determination for all Iowans.
Early Access
Early Access is Iowa's early intervention system and they played a vital role in getting my son the services he needed well before his first birthday. This enabled him to have occupational therapy and physical therapy in our home each week until he aged out of those services and into preschool. In addition, they helped us learn that my son qualified for a waiver due to his disability and helped guide us on how to get my son the healthcare coverage that he is entitled to.