Section I Funding Opportunity Description
Background
Down syndrome is the most common genetic cause of intellectual disability, the most common autosomal trisomy, and one of the most visible and universally recognized genetic syndromes. Each year there are approximately 5300 babies born in the United States with Down syndrome. Within the past 25 years, the average lifespan for a person with Down syndrome has doubled, from 30 to 60 years. Despite this increase in lifespan, individuals with Down syndrome and their families face significant and changing health challenges with age. While all people with Down syndrome are connected by the common feature of a complete or partial copy of chromosome 21 , there are significant physical and cognitive differences among them, indicating that inter-individual variability exists.
- Component 1: targeted high risk – high reward basic science studies
- Component 2: development of a cohort to perform deep phenotyping and study co-existing conditions
- Component 3: establishing a clinical trials network so that therapies for co-occurring conditions can begin to be tested in the Down syndrome population as soon as possible, while also further supporting and expanding existing clinical trial infrastructure
Purpose
Scope
Best Charities For Down Syndrome Support
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Dsamn Has Long Offered Financial Support For Families Through Discounted Fees Scholarships And Assistance For Families Facing Financial Hardship
We have a suite of programs and partnerships to support individuals with Down syndrome and their families. Our financial assistance programs, scholarships and subsidies are available to individuals with Down syndrome who reside in Minnesota or any community in our neighboring states that is within 25 miles of the Minnesota border.
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Down Payment Assistance Program
The Down Payment Assistance Program assists Nova Scotians who pre-qualify for an insured mortgage to purchase their first home. Eligible participants can apply to receive a loan of up to five per cent of the purchase price of a home.
Loans provided under this program are interest-free, repayable over a 10-year period, and must be used for a down payment . The maximum loan available is $25,000.
Path International: Changing Lives Through Equine
PATH International was founded in 1969 by 23 passionate individuals, to develop the horse therapy industry for people with special needs, including Down Syndrome. Today, the charity is a national accreditation organization with thousands of members around the world.
Their impact and transparency ratings: PATH International holds the Gold Seal of Transparency from GuideStar. The charity also has a 100% Encompass rating for finance & accountability from Charity Navigator.
To ensure universal recognition of professional equine-assisted services and their transformative impacts that enrich lives.
PATH International
What they do: PATH International promotes the benefits of equine-assisted therapies for children and adults with disabilities by training, testing, and accrediting horse centers in equine therapies. In addition, the charity runs regular educational workshops for its members as well as university-level courses to train the next generation of equine-assisted therapy experts.
What theyve achieved: Today, PATH International has accredited 873 member centers as well as 8,000 individual certified instructors around the globe. These members assist almost 69,000 children and adults with special needs every year, including those with Down syndrome. In 2019, the charity also accredited 883 Mental Health and Learning Equine Specialists to assist those who face developmental and emotional challenges in everyday life.
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Other Award Budget Information
Individuals designing, directing, and implementing the research education program may request salary and fringe benefits appropriate for the person months devoted to the program. Salaries requested may not exceed the levels commensurate with the institution’s policy for similar positions and may not exceed the congressionally mandated cap. .
Participants may be compensated for participation in activities specifically required by the proposed research education program, if sufficiently justified. Participant costs must be itemized in the proposed budget.
Allowable participant costs depend on the educational level/career status of the individuals to be selected to participate in the program.
While generally not an allowable cost, with strong justification, participants in the research education program may receive per diem unless such costs are furnished as part of the registration fee. Participants may also receive funds to defray partial tuition and other education-related expenses.
Expenses for foreign travel must be exceptionally well justified.
Individuals supported by NIH training and career development mechanisms may receive, and indeed are encouraged to receive, educational experiences supported by an R25 program, as participants, but may not receive salary or stipend supplementation from a research education program.
Indirect Costs are reimbursed at 8% of modified total direct costs , rather than on the basis of a negotiated rate agreement.
Easterseals: Leading The Way To 100% Inclusion Equity And Access
Easterseals was founded in 1919 by Edgar Allen after he tragically lost his son to a streetcar accident. While at the hospital, he was shocked to learn that children with disabilities were often hidden from public view so he decided to make a difference. Today the charity is the largest non-profit healthcare organization in America.
Their impact and transparency ratings: Easterseals holds the Silver Seal of Transparency from GuideStar. The charity also has a 100% Encompass rating for finance & accountability from Charity Navigator.
Committed to ensuring that the needs of children and adults with disabilities, veterans and older adults are met with services and support to help them live, learn, work and play in their communities.
Easterseals
What they do: Easterseals utilizes their team of therapists, support professionals, and health care experts to meet the needs of people with disabilities across America, including those with Down syndrome. Through their therapy programs, the charity offers early intervention services for children, as well as employment training, and health programs for adults. In addition, Easterseals runs several recreation and camp services for disabled people across America.
Ways to contribute: You can donate directly to Easterseals through their website. You can also support the charity by joining a Walk With Me event to raise awareness or by volunteering.
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The Importance Of Support Networks And Charities
While there are government and financial-aid programs designed to help cover the high cost of raising a child with a disability, the strongest indicator of safety and security for their is the number of unpaid relationships they have in their lives, she says.
Beyond immediate friends and family members, parents caring for children with disabilities can turn to a variety of networks for both moral support and logistics help. Support networks like these are crucial for parents with children with disabilities, says Rebecca Pauls, executive director of the Planned Lifetime Advocacy Network, which networks with families with children with disabilities.
Navigating all the challenges to care for Jim is an all-consuming storm, says Melberg-Schwier, adding that when she does find the right support, it’s invaluable: You just want to get to a point where you can enjoy your family.”
Section Iii Eligibility Information
Applicant organizations
Applicant organizations must complete and maintain the following registrations as described in the SF 424 Application Guide to be eligible to apply for or receive an award. All registrations must be completed prior to the application being submitted. Registration can take 6 weeks or more, so applicants should begin the registration process as soon as possible. The NIH Policy on Late Submission of Grant Applications states that failure to complete registrations in advance of a due date is not a valid reason for a late submission.
- Dun and Bradstreet Universal Numbering System – All registrations require that applicants be issued a DUNS number. After obtaining a DUNS number, applicants can begin both SAM and eRA Commons registrations. The same DUNS number must be used for all registrations, as well as on the grant application.
- System for Award Management â Applicants must complete and maintain an active registration, which requires renewal at least annually. The renewal process may require as much time as the initial registration. SAM registration includes the assignment of a Commercial and Government Entity Code for domestic organizations which have not already been assigned a CAGE Code.
- NATO Commercial and Government Entity Code â Foreign organizations must obtain an NCAGE code in order to register in SAM.
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How Do I Learn About Current Clinical Trials Or Research Studies
There are many ways to learn about clinical trials or research studies that are currently accepting participants. Your doctor might be involved with a clinical trial, or he or she may know of other trials or studies that might be appropriate.
You can also conduct your own research on the subject, or look on the NDSS webpage to find a listing of current clinical trials and other research studies.
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Related Grants for down syndrome:
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What Is The Difference Between Informed Consent And Informed Permission
Individuals who decide to enroll in a clinical trial are required to sign a consent form. This is usually the case for research studies as well. Typically, this form explains the trials purpose and protocol. It also describes the treatment that is being evaluated, along with its risks, possible benefits, and known side effects. A participant should only sign this form after he or she is fully informed about what is involved in the study and has made a voluntary decision to participate.
When the potential trial or study participant is a minor, parents are asked to give informed permission for their child to participate. Medical experts agree that children as young as seven years old can and should be included in the decision-making process. Therefore, children should receive an explanation of the study that is appropriate to their age and comprehension level, and they should agree to enroll in a trial before parents sign the consent form.
Down Syndrome International: Promoting Equal Rights
Down Syndrome International was founded in 1993 by Jo Mills, Penny Robertson, and Sylvia Escamilla, as a result of a shared desire to improve the lives of people with Down syndrome. Today, the charity is an international disabled peoples organization dedicated to promoting equal rights for those with Down syndrome.
Their impact and transparency ratings: According to their financial report, Down Syndrome International spent 29% of its expenditure on policy, advice, and support, 33% on network development and training, and 23% on campaigning.
People with Down syndrome living healthy and meaningful lives in the community.
Down Syndrome International
What they do: Down Syndrome International works with a diverse network of organizations to run global awareness campaigns for Down Syndrome. Through their employment advocacy project, the charity publishes guidelines for employers to ensure that people with Down Syndrome receive equal access to employment opportunities, and provide training on human rights in 5 countries. They are also supporting the development of the very first Rwanda Down Syndrome Organization through their Rwanda Support Project.
Ways to contribute: You can donate directly to Down Syndrome International through their website. You can also support the charity by volunteering or by setting up a fundraising event.
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Star Institute: Experts In Sensory Health
The STAR Institute was founded in 2016 as a merger between the STAR Center and the SPD Foundation. Today, the charity supports and treats children with sensory processing disorders, which are common in children with Down syndrome.
Their impact and transparency ratings: The STAR Institute holds the Gold Seal of Transparency from GuideStar. The charity also has an 85% Encompass rating for finance & accountability from Charity Navigator.
To impact quality of life by developing and promoting best practices for sensory health and wellness through treatment, education, and research.
STAR Institute
What they do: The STAR Institute provides individualized treatments at their center in Denver, for children suffering from Sensory Processing Disorder, Down syndrome, and ADHD among others. The charity also provides a diverse variety of online courses for professionals working with these children. In addition, they offer research mentorship programs for scientists working in the field of sensory integration, as well as conducting their own research at their research center.
What theyve achieved: Today, the STAR Institutetreats families in over 38 countries and 49 states. They have also reached over 12,750 parents and professionals through their SPD-focused educational events. Their research center is now considered to be the premier institute for sensory processing disorders worldwide.
Global Down Syndrome Foundation: Improving The Lives Of People With Down Syndrome
The Global Down Syndrome Foundation was founded in 2009 by Michelle Sie Whitten after she found out that only a small percentage of the NIH budget goes towards Down Syndrome Research. Today, the charity advocates for the rights of Down syndrome sufferers and raises vital funds for research into the condition.
Their impact and transparency ratings: The Global Down Syndrome Foundation holds the Gold Seal of Transparency from GuideStar. The charity has yet to be scored by Charity Navigator.
To significantly improve the lives of people with Down syndrome through research, medical care, education, and advocacy.
Global Down Syndrome Foundation
What they do: The Global Down Syndrome Foundation invests critical funds into Downs syndrome research. They also raise awareness of the condition through their numerous programs and events, including their renowned annual Be Beautiful Be Yourself Fashion Show. In addition, they heavily support the Linda Crnic Institute for Down Syndrome, which is the only establishment in America dedicated solely to research and medical care for people with Down syndrome.
What theyve achieved: To date, the Global Down Syndrome Foundation has awarded 224 live-saving grants and invested $876,181 in their local Down syndrome member organizations. This work has reached an estimated 14,000 families across 40 states and 5 countries. Their Be Yourself Be Beautiful Fashion Show is now the single-largest annual fundraiser benefiting people with Down syndrome.
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Special Educational Needs Inclusion Fund
In addition, the government requires every local authority in England to establish a SEN inclusion fund to support early years providers in improving outcomes for children with special educational needs. Each local authority must publish details on how they are using their SEN inclusion fund to support their early years SEN cohort, as part of their published “Local Offer”. The information published should include the fund’s planned value, eligibility criteria, and the process for allocating the fund to providers.
