RARE Carousel of Possible Dreams

Together dreams are possible.

The RARE Carousel of Possible Dreams is a unique opportunity designed to give our Foundation Alliance members an exciting and innovative way to raise awareness, fundraise, and cultivate new donors through the collaborative partnership between Global Genes® and Festival of Children Foundation.  

From February 1st through March 15th, more than thirty Global Genes Foundation Alliance members will participate in one of the largest collaborative, online rare disease fundraising efforts.

With a collective fundraising goal of more than $1 Million, these Foundations, representing specific disease communities, with national scope, will host actual and virtual RARE Carousel events to raise awareness and funds to support their communities. Integral to the campaign are the dreams they dream, and the concept that together dreams are possible.

Global Genes and the Festival of Children Foundation will be hosting a RARE Carousel of Possible Dreams Celebration and Awareness Event on February 28, 2018, from 6:00 pm to 8:30 pm, at the Children’s Creativity Carousel and Museum, 221 4th Street, San Francisco, CA 94103.

Global Genes and Festival of Children Foundation will provide participating Foundation Alliance members with ongoing training and resources to ensure a successful fundraising campaign. A step-by-step fundraising tool will be provided to further the possibility that their possible dream can come true.

“A dream you dream alone is only a dream. A dream you dream together is a reality.”   – John Lennon

For more information, please email Meredith Cagle or Amy Grover at Global Genes. 

Happy RARE Riding!

 

5p- Society

www.fivepminus.org

The 5p- Society is the support organization for individuals who have 5p- syndrome. We are a “pay it forward” organization where our members receive support (get help), provide support to other families (give help), and document best practices and solutions for future families (leave a trail). We have a “people first” approach to put the person before the disability and focus on strengths not limitations. Mission: to maximize the quality of life of an individual with 5p- and their families.

Dream: 5p-Society Family Meetups: Inspiration, Friendship and Education Possibility through Regional Gatherings

 

11q Research and Resource Group

http://www.11qusa.org

The mission 11q Research and Resource Group is to provide support and organizational efforts for the parents, as well as friends and family, of all children with 11th chromosome abnormalities, including deletions (monosomy), duplications (trisomy) and translocations. Through networking, cooperation with the research community, and the resulting sharing of information, we will be better able to meet the challenges brought to us as parents, families and friends of 11q children.

Dream: Keep Our Research Lab Running in 2018

 

ADNP Kids Research Foundation

www.adnpfoundation.org

The mission of the ADNP Kids Research Foundation (ADNP-KRF) is to advance the awareness and accelerate the treatment of ADNP Syndrome / Helsmoortel – Van Der Aa Syndrome (ADNP) by supporting research for treatments and drug development, promoting individualized specialty care and protocol, increasing awareness and scientific understanding, supporting families and providing information to help all individuals with ADNP realize their full potential and have a better quality of life.

Dream: World’s 1st ADNP Kids Family Conference

 

Alagille Syndrome Alliance

www.alagille.org

The ALGSA is an international nonprofit based in Oregon. We mobilize resources, facilitate connections, promote unity, and advocate for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome (ALGS). We are a driver of ALGS advocacy, awareness, patient support, and research. We represent a vibrant community and provide a vital link among families, as well as offer them the resources they need to help their children live longer and healthier lives.

Dream: Grab the Brass Ring for ALGS Research

 

ALD Connect

www.aldconnect.org

The mission of ALD Connect is to improve health outcomes for individuals with X-linked adrenoleukodystropy (ALD) by raising disease awareness, empowering patients, and accelerating the translation of scientific advances into better clinical care. We bring together physicians, academic institutions, and pharma partners in a pre-competitive space where we can work toward the common goal of curing ALD.

Dream: ALD NBS S.C.O.U.T. Program (Supportive Community Outreach & Understanding Together)

 

Amour Fund

amourfund.org

Amour means ‘Resilient’ in Armenian and ‘Love’ in French. It’s not a coincidence that CDG kids are Amour. Our goal is for children with CDG to be ‘Amour’ so that they can live to their fullest potential walk, talk, smile, and laugh like all children. The ultimate vision of the Amour Fund is to find a cure for Congenital Disorders of Glycosylation (CDG) by supporting CDG research. Amour fund honors disadvantaged children, raises awareness about rare diseases, advocates for screening, and provides assistance to those in need.

Dream: Development of a Viable Mouse Model for PMM2-CDG

 

AT Children’s Project

www.atcp.org

Established in the United States in 1993, the A-T Children’s Project raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding life-improving therapies and a cure for ataxia-telangiectasia (A-T). A-T is a rare, genetic disease that attacks children, causing progressive loss of muscle control, cancer, and immune system problems.

Dream: Sequencing Children with Ataxia-Telangiectasia

 

Beautiful You MRKH Foundation

www.beautifulyoumrkh.org

The mission of the Beautiful You MRKH Foundation is to create a supportive community that partners with health care professionals to increase awareness and empower women of all ages with MRKH to feel beautiful, just as they are. We welcome members from around the world and believe that through our differences, we will find our greatest strengths.

Dream: Achieving the Dream: Creating Families for Those Facing Infertility

 

Bohring-Opitz Syndrome Foundation

www.bos-foundation.org

Established in 2015 by Carrie Hunsucker and Taylor Gurganus, The Bohring-Opitz Syndrome Foundation, Inc. is dedicated to improving the lives of people affected by BOS through the establishment of a medical advisory board, awareness initiatives, and parent/patient advocacy. 

Dream: To support BOS Families through patient assistance programs.

 

Bridge the Gap – SYNGAP Education and Research Foundation

www.bridgesyngap.org

Bridge the Gap – Syngap ERF began in September of 2014 when a group of parents of children living with SYNGAP1 mutations came together. The common bond is one driven by a desire to raise awareness and search out treatments to improve quality of life for these inspiring individuals. Our mission is to serve, educate and fund research for families coping with the effects of SYNGAP mutations.

Dream: SYNGAP1 Family Meet Ups

 

CFC International

www.cfcsyndrome.org

CFC International was founded in 1999 by parents of children with Cardio-Facio-Cutaneous syndrome. We are the leading international organization dedicated to providing support for persons and families dealing with CFC syndrome. We serve as a clearinghouse of information on all aspects of CFC syndrome. We are committed to supporting research on CFC syndrome. We seek treatments and keep reaching for a cure, offering hope to those individuals and their families affected by this condition.

Dream: Research on CFC Syndrome

 

Children’s Tumor Foundation

http://www.ctf.org/

The Children’s Tumor Foundation’s mission is to drive research, expand knowledge, and advance care for the NF community.

Dream: Send a Kid to NF Camp!

 

Connecting Families – UCD Foundation

http://www.ucdfamily.org/

Connecting Families UCD Foundation represents those affected by a rare disease called urea cycle disorders. Our goal is to bring those affected together for meetings with professionals, doctors, dieticians, and others for education, awareness, and the opportunity to meet others with the same illness.

Dream: Family Camp!

 

Cure GM1 Foundation

www.curegm1.org

The Cure GM1 Foundation is dedicated to hope and to directly funding research for a cure for GM1 Gangliosidosis, a lysosomal storage disease that attacks the brain and spinal cord and is always fatal in children.  GM1 is a progressive and degenerative condition with an extremely broad and debilitating array of symptoms and complications.  This nonprofit organization was founded by parents of children who suffer from GM1 who seek to save the lives of all those who suffer from this wretched condition.

Dream: Advancing Treatments and Cures for GM1 Gangliosidosis

 

Cystic Fibrosis Research, Inc

www.cfri.org

Founded in 1975, Cystic Fibrosis Research, Incorporated (CFRI) provides educational and personal support, and spreads awareness of cystic fibrosis (CF), a life-threatening genetic disease. As we work to find a cure for cystic fibrosis, CFRI seeks to inform, engage and empower the CF community to reach the highest possible quality of life. 

Dream: Let’s Find a Cure for CF! 

 

Danny’s Dose Alliance

www.dannysdose.com

Danny’s Dose Alliance is dedicated to ensuring the prompt and proper treatment for all with rare disease and special medical needs in emergencies. The Alliance also supports specialized education for paramedics along with emergency preparedness for affected families.   

Dream: Emergency Preparedness Family Education & Fun Events in 8 states in 2018

 

Dup15q

www.dup15q.org

Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.

Dream: Dup15q Alliance Clinic Support Program – "Tyler's Travel Fund"

 

Dyskeratosis Congenita Outreach, Inc (DCO)

www.dcoutreach.org

Dyskeratosis Congenita Outreach, Inc. is an international network of patients, caregivers, physicians and researchers. Our mission is to provide information and support services to families worldwide affected by Dyskerastosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

Dream: DC Outreach’s Families Connect

 

Helping Hands for GAND

www.gatad2b.org

Helping Hands for GAND exists to support individuals and families affected by GATAD2B-associated neurodevelopmental disorder (GAND), to increase awareness, and to work toward research and treatment opportunities to enrich the lives of those with this rare genetic condition. 

Dream: Enable Research for GAND

 

KIF1A.org

www.kif1a.org

KIF1A.org is a patient-led foundation started by parents dedicated to finding a cure for children living with KIF1A, a rare neurodegenerative genetic disease. Approximately 100 people are currently known to have the disorder, which causes complex medical conditions that rob children of their full ability to talk, walk and see. Waiting is not an option for KIF1A kids; we need treatment today. KIF1A.org powers medical research to discover treatment.

Dream: Accelerate KIF1A Research

 

Koolen-de Vries Syndrome Foundation

www.supportingkdvs.org

Koolen-de Vries Syndrome Foundation is a nonprofit organization that provides support to individuals and their families living with Koolen-de Vries Syndrome. Founded in 2013, our organization supports families by raising awareness, educating, and assisting with funding genetic research for KdVS.

Dream: Kool Campaign for KdVs – Funding Research for Koolen-de Vries Syndrome

 

M-CM Network

www.m-cm.net

M-CM Network provides comprehensive medical information about M-CM to aid in diagnosis and treatment decisions. Our goal is to establish a disease registry to collect data about affected individuals so that we can greatly expand the scope of what is known about M-CM.

Dream: The Right Care

 

NBIA Disorders Association

www.NBIAdisorders.org

NBIA Disorders Association is dedicated to finding treatments and cures for a group of rare, genetic Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. They are primarily diagnosed in childhood, dealing with significant impairment regarding movement, often including loss of walking, talking, chewing, sight, and mental faculties. Many have a shortened life. We serve as an international leader and expert advancing awareness, supporting families, and funding research into these rare disorders, collaborating with sister organizations and scientists around the globe.

Dream: Providing Hope and Help – Family Support

 

Noonan Syndrome Foundation

www.teamnoonan.org

The Noonan Syndrome Foundation is an organization that was created to help support, educate, and advocate for and on behalf of all those who have been affected by Noonan Syndrome. 

Dream: Help the NSF Raise Money for Parent and Educational Guides

 

Pathways for Rare and Orphan Studies

www.prosfoundation.org

Pathways for Rare and Orphan Studies (PROS) works with rare disease patient advocacy groups, focusing on strengthening the groups’ ability to work towards clinical trials in the hopes of treatment discovery. Patient organizations can play an important role in the development of treatments for rare diseases. They can help in the design of the right study, increasing its likelihood of success, as well as expediting the drug development process.

Dream: Around We Go: An adventure to empower and gather data

 

PTEN Hamartoma Tumor Syndrome Foundation

www.ptenfoundation.org

The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes by funding research, providing PHTS education, supporting patients, and by raising awareness. PHTS includes Cowden syndrome (CS), Bannayan-Riley-Ruvalcaba syndrome (BRRS), PTEN-related Proteus syndrome (PS), and Proteus-like syndrome.

Dream: Family Fund to Support Children Who Want to Participate in a Research Study

 

PVNH Support & Awareness

www.pvnhsupport.com

PVNH Support & Awareness is a nonprofit organization of international reach which collaborates with PVNH genetic leaders, specialists, researchers. We also have alliances with some of the most outstanding rare disease advocates worldwide. PVNH Support & Awareness exists to give affected patients and families a gathering place and to educate patients, families as well as medical and other communities about PVNH and other neuronal heteropia disorders.

Dream: Unite and Research at 100%

 

Rare and Undiagnosed Network (RUN)

www.rareundiagnosed.org

RUN stands for Rare & Undiagnosed Network. We are a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.

Dream: Pay Medical Bills or Medical Travel Bills for our Rare and Undiagnosed (RUN) Families

 

Relapsing Polychondritis Awareness and Support Foundation

www.polychondritis.org

The Relapsing Polychondritis Awareness and Support Foundation, Inc. is a non-profit organization dedicated to supporting and advocating research, providing patient and family assistance, educating the general public and medical communities, and increasing awareness and support of Relapsing Polychondritis.

Dream: Pediatric Relapsing Polychondritis – Rare Beyond Compare

 

SCAD Alliance

www.scadalliance.org

Spontaneous Coronary Artery Dissection (SCAD) impacts the lives of both the afflicted and their families. It is most often misdiagnosed and can occur with no clear warning signs. Overcoming SCAD is a team effort for families, especially those with children. SCAD Alliance is dedicated to understanding and managing this unforeseen condition and supporting those whom it has affected.

Dream: Fueling Independent Research Through our Multi-Center iSCAD Registry

 

SETBP1

www.setbp1.org

Our mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

Dream: Develop a SETBP1 Disorder Guide

 

STXBP1 Disorders Foundation

www.stxdisorders.org

The STXBP1 Foundation is a parent run organization providing funding to further pursuits which will benefit our community. Currently we are pursuing research endeavors which will help us to better understand the mechanism of the STXP1 protein, in hopes of using this knowledge create more effective treatments for those affected by STXBP1. It is our ultimate goal that our efforts will one day lead to a cure of all STXBP1 disorders.

Dream: STXBP1 Inaugural Family and Scientific Conference

 

Super Kids: Mission Zero, Inc.

www.superkidsmissionzero.org

Super Kids: Mission Zero, Inc. is an Indianapolis, IN based nonprofit founded in 2017.  Super Kids: Mission Zero is dedicated to assisting children with epilepsy learn to manage the effects of the neurological disorder with the help of educational tools and resources. Founded and developed by Jessica Rohn, Super Kids: Mission Zero utilizes families with children experiencing the effects of epilepsy, grassroots movements within communities, and educational programming.

Dream: Tutor Depot: A Place for Trained Volunteers

 

Festival of Children Foundation (FOCF) is a 501c3 non-profit organization that serves to bring together and coordinates the efforts of charities, companies, and individuals who actively work to improve the lives of children.  Festival of Children Foundation gives voice, guidance and support.   The Carousel of Possible Dreams if FOCF’s signature program that connects those with the means to those with the ability to improve the lives of children.  For more information, visit festivalofchildren.org.