February 3, 2010
IRSF Announces Translational Research Award to Test Potential Therapeutics for Rett Syndrome
IRSF will commit $446,000 to fund a large translational research program to test potential therapeutics for Rett syndrome in mouse models through the new Advanced Neurotherapeutic Grant of Excellence (ANGEL) award mechanism. This will be the first ANGEL grant awarded by IRSF in 2010. The new program will be carried out by a team of Rett syndrome researchers at Case Western Reserve University School of Medicine, led by David M. Katz, Ph.D., Professor of Neurosciences. Building on previous proof-of-concept studies conducted in Dr. Katz’s laboratory, the project will evaluate drugs, which may improve breathing problems, including several new candidate drugs under development. Respiratory dysfunction is one of the more serious complications of the disease. The therapeutics under investigation might also address other aspects of Rett syndrome. Dr. Katz and his team will systematically assess several classes of compounds, with a particular focus on improving neuronal signaling mediated by a neuronal growth protein called Brain Derived Neurotrophic Factor (BDNF), a key molecule implicated in Rett syndrome.
IRSF Awarded $180,000 in Center for Disease Control Grant
IRSF is pleased to announce that we have been awarded $180,000 from the Center for Disease Control to support education and awareness for patients, health professionals, and the public regarding Rett syndrome (RTT), as well as outreach, registry formation and database build-out to help organize and accurately inform families that are dealing with this debilitating disorder. From this funding, IRSF expects to be able to find and serve more families affected by Rett syndrome, and also support the development of strategic outcome measures to position the Rett community for clinical trials on the horizon.
Read More
What’s New for MeCP2?
MeCP2 dysfunction in specific classes of neurons leads to different Rett syndrome symptoms
by IRSF Chief Scientific Officer Dr. Antony Horton
In a study recently published in the journal ‘Proceedings of the National Academy of Sciences’, a team of researchers at Baylor College of Medicine, recently discovered that loss of MeCP2 in certain types of nerve cells can disrupt the production of specific neurotransmitters. Neurotransmitters carry messages from one cell to another in the form of chemical signal. A group of neurotransmitters which includes acetylcholine, dopamine, norepinephrine, and serotonin share certain chemical properties in common and their production is regulated by a specific set of enzymes. The enzymes in question are carefully regulated and their regulation is under the control of MeCP2. Lead investigator Dr. Jeffrey Neul, commented "Abnormalities in MeCP2 lead to decreased production of enzymes that control production of critical neuronal signaling molecules; the neurotransmitters dopamine, norepinephrine and serotonin - too little dopamine can result in movement problems similar to those seen in Parkinson's disease. Low serotonin levels are associated with increased anxiety and aggression – behaviors also seen in Rett”. Sophisticated techniques were used to measure levels of these enzymes and confirmed using new mouse models that selectively removed the Mecp2 gene from specific types of nerve cells. When Mecp2 was selectively removed from neurons that normally use dopamine, this caused decreased expression of dopamine producing enzymes and corresponding changes in motor function was seen. Dr. Huda Zoghbi one of the study’s co-author’s commented further “This study, and in particular the data in patients, confirmed our first ever clinical study on Rett syndrome". In 1985, Dr. Zoghbi and her collaborators first found that the metabolites of dopamine and norepinephrine were decreased in the spinal fluid of six girls with Rett syndrome. (N Engl J Med. 1985 Oct 10;313(15):921-4 - metabolites are the breakdown products that remain after the neurotransmitters accomplish their tasks). This work was funded in part by research grants provided by IRSF.
Cognitive and social dysfunction are linked to growth factor levels in a mouse model of Rett syndrome
by IRSF Chief Scientific Officer Dr. Antony Horton
Disturbances in social behavior, movement disorder, and restricted interests are common features seen in both RTT and classic autism. Although mouse models of both RTT and autism exist, so far, social behaviors have not been thoroughly explored in a mouse model of RTT. A new study by a team of researchers led by Dr. Joanne Berger-Sweeney at Wellesley College MA, shows that there are subtle social and cognitive deficits in Mecp2 deficient mice, an animal model of RTT. The RTT mice show severe deficits in short- and long-term memories related to object recognition, that are reminiscent of the cognitive dysfunction seen in RTT girls. Social behavior is also variant in the RTT mice, which willingly spend more time in contact with unfamiliar mice than control (non-RTT) mice do. This is consistent with reports of increased social interaction seen in RTT girls compared with decreased social interaction in classic autism. Interestingly, levels of the neurotrophins brain-derived neurotrophic factor (BDNF), insulin-like growth factor-1 (IGF-1), and nerve growth factor (NGF) were decreased in the Mecp2 null mice. The researchers speculate that this may provide a mechanism for both the cognitive deficits and the increased motivation for social contact observed in the Mecp2 null mice. The study supports the view that there are different underlying mechanisms at play between RTT and autism, particularly with regard to social interactions. The study was published in the January edition of the journal 'Physiology & Behavior'. Dr. Berger-Sweeney is currently a serving as a member of the IRSF’s Scientific Review Board.
Other News
Medical journal retracts study linking autism to vaccine
The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism. The study linked autism with the MMR vaccine. The research had been discredited subsequently. Last week, the study's lead author Dr Andrew Wakefield was found to have acted unethically in conducting the research.
Click here for original article
PET study links autism to neurological impairment
Japanese researchers who used PET imaging on men with and without autism found that the brain nerves responsible for controlling emotions and other functions were on average 30% less active in those with autism. The finding has potential applications in the prevention or treatment of the condition.
Click here for original article
New technique using synthetic molecules might aid drug discovery
Scientists said they were able to induce ‘riboswitches’ that can be seen in messenger RNA to activate certain genes in bacteria by adding artificial molecules. "Being able to selectively activate and regulate genes could have tremendous impact in drug discovery and the emerging field of synthetic biology," a lead researcher on the study said.
Click here for original article
Stem cell-derived neurons form brain structures in newborn mice
Newborn mice that received transplants of cortical neurons derived from stem cells showed development of brain connections in appropriate areas, U.S. scientists found. They believe the results could pave the way for new therapies for a number of different neurologic diseases and spinal cord injuries.
Click here for original article
NIH contract calls for Coriell to include iPS cells in genetic biobank
The NIH's National Institute of General Medical Sciences (NIGMS) has awarded a $27 million contract to the Coriell Institute for Medical Research to incorporate induced pluripotent stem cells (iPSc) into the human genetic cell repository of the NIGMS. The five-year contract also calls for New Jersey-based Coriell to gather cell lines and DNA samples from patients born with isolated congenital cardiac defects.
Click here for original article
Scientists develop disease specific stem cells for research
Scientists at the University of California, San Diego, have developed genetically enhanced stem cells that can be used in studying various diseases by introducing disease genes into the cells using "bacterial artificial chromosomes." They think the resulting cells could be used in testing experimental treatments, the lead researcher said.
Click here for original article
Gene therapy may ease breathing difficulty in Pompe disease
Researchers were able to improve breathing in laboratory mice afflicted with Pompe disease after injecting a harmless virus carrying a gene that produces an enzyme known as acid alpha-glucosidase. Dr. Barry Byrne, the lead author of the study, hopes that the gene therapy would complement existing treatments to improve patients' quality of life.
Click here for original article
Selected Abstracts from the Latest Published RTT-Related Research
MeCP2 deficiency downregulates specific nuclear proteins that could be partially recovered by valproic acid in vitro.
Vecsler M, Simon AJ, Amariglio N, Rechavi G, Gak E.
MeCP2 deficiency downregulates specific nuclear proteins that could be partially recovered by valproic acid in vitro.
Epigenetics. 2010 Jan 13;5(1).
Sagol Neuroscience Center, Sheba Medical Center, Tel Hashomer, Israel; Department of Human Molecular Genetics and Biochemistry, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.
Four unrelated patients with lubs X-linked mental retardation syndrome and different Xq28 duplications
Bartsch O, Gebauer K, Lechno S, van Esch H, Froyen G, Bonin M, Seidel J, Thamm-Mücke B, Horn D, Klopocki E, Hertzberg C, Zechner U, Haaf T.
Am J Med Genet A. 2010 Jan 15.
Institut für Humangenetik, Universitätsmedizin der Johannes Gutenberg-Universität Mainz, Mainz, Germany.
CpG Methylation Attenuates Sp1 and Sp3 binding to human extracellular superoxide dismut ase promoter and regulates its cell-specific expression.
Zelko IN, Mueller MR, Folz RJ.
Free Radic Biol Med. 2010 Jan 12.
Department of Medicine, University of Louisville, Louisville, KY 40202.
Partial silencing of methyl cytosine protein binding 2 (MECP2) in mesenchymal stem cells induces senescence with an increase in damaged DNA.
Squillaro T, Alessio N, Cipollaro M, Renieri A, Giordano A, Galderisi U.
FASEB J. 2010 Jan 11.
*Sbarro Institute for Cancer Research and Molecular Medicine, Center for Biotechnology, Temple University, Philadelphia, Pennsylvania, USA;Department of Medical Genetics andDepartment of Human Pathology and Oncology University of Siena, Sienna, Italy;Department of Experimental Medicine, Biotechnology and Molecular Biology Section, Second University of Naples, Naples, Italy; and ||Human Health Foundation, Spoleto, Italy.
Nrf2 expression is regulated b y epigenetic mechanisms in prostate cancer of TRAMP mice.
Yu S, Khor TO, Cheung KL, Li W, Wu TY, Huang Y, Foster BA, Kan YW, Kong AN.
PLoS One. 2010 Jan 5;5(1):e8579.
Department of Pharmaceutics, Ernest Mario School of Pharmacy, Rutgers, The State University of New Jersey, Piscataway, New Jersey, United States of America.
NGF and BDNF: from nerves to adipose tissue, from neurokines to metabokines.
Chaldakov GN, Tonchev AB, Aloe L.
Riv Psichiatr. 2009 Mar-Apr;44(2):79-87.
Division of Cell Biology, Medical University, Varna, Bulgaria. chaldakov@yahoo.com
Trihexyphenidyl for acute life-threatening episodes due to a dystonic movement disorder in Rett syndrome.
Gika AD, Hughes E, Goyal S, Sparkes M, Lin JP.
Mov Disord. 2010 Jan 8.
Department of Paediatric Neurology, Evelina Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.
Cognitive and social functions and growth factors in a mouse model of Rett syndrome.
Schaevitz LR, Moriuchi JM, Nag N, Mellot TJ, Berger-Sweeney J.
Physiol Behav. 2010 Jan 4.
Department of Biological Sciences, Wellesley College, Wellesley MA 02481, United States.
Alterations of Cortical and Hippocampal EEG Activity in MeCP2-Deficient Mice.
D'Cruz JA, Wu C, Zahid T, El-Hayek Y, Zhang L, Eubanks JH.
Neurobiol Dis. 2009 Dec 29.
Division of Genetics and Development, Toronto Western Research Institute, University Health Network, 399 Bathurst Street, Toronto, Ontario, Canada M5T 2S8; Institute of Medical Sciences, University of Toronto, Toronto, Ontario, Canada M5S 1A8.
Intrinsic membrane properties of locus coeruleus neuronsin Mecp2-null mice.
Zhang X, Cui N, Wu Z, Su J, Tadepalli JS, Sekizar S, Jiang C.
Am J Physiol Cell Physiol. 2009 Dec 30.
Georgia State University.
Early abnormalities of post-sigh breathing in a mouse model of Rett Syndrome.
Voituron N, Zanella S, Menuet C, Lajard AM, Dutschmann M, Hilaire G.
Respir Physiol Neurobiol. 2009 Dec 26.
Maturation, Plasticity, Physiology and Pathology of Respiration (mp3-resp team), Unité Mixte de Recherche 6231 CNRS, Faculté Saint-Jérôme, Service 362, 13397 Marseilles Cedex 20, France.
Computer Navigation-Assisted Spinal Fusion with Segmental Pedicle Screw Instrumentation for Scoliosis with Rett Syndrome:A Case Report.
Tanaka M, Nakanishi K, Sugimoto Y, Misawa H, Takigawa T, Nishida K, Ozaki T.
Acta Med Okayama. 2009 Dec;63(6):373-377.
Department of Orthopaedic Sugery, Okayama University Hospital, Okayama, Japan.
Profiling Scoliosis in Rett Syndrome.
Percy AK, Lee HS, Neul JL, Lane JB, Skinner SA, Geerts SP, Annese F, Graham J, McNair L, Motil KJ, Barrish JO, Glaze DG.
Pediatr Res. 2009 Dec 21.
Department of Pediatrics [A.K.P., J.B.L., S.P.G.], University of Alabama at Birmingham, Birmingham, AL 35294; Department of Pediatrics [H.-S.L.], University of South Florida, Tampa, FL 33612; Department of Pediatrics [J.L.N., K.J.M., J.O.B., D.G.G.], Baylor College of Medicine, Houston, TX 77079; Greenwood Genetic Center [S.A.S., F.A., J.G., L.M.], Greenwood, SC 29646.
Identification and characterization of novel sequence variations in MECP2 gene in Rett syndrome patients.
Monnerat LS, Moreira AD, Alves MC, Bonvicino CR, Vargas FR.
Brain Dev. 2009 Dec 21.
Programa de Genética, Instituto Nacional de Câncer (INCA), Rio de Janeiro, Brazil.
MeCP2 functions largely cell-autonomously, but also non-cell-autonomously, in neuronal maturation and dendritic arborization of cortical pyramidal neurons.
Kishi N, Macklis JD.
Exp Neurol. 2009 Dec 15.
MGH-HMS Center for Nervous System Repair, Departments of Neurosurgery and Neurology, and Program in Neuroscience, Harvard Medical School, Boston, MA, USA; Nayef Al-Rodhan Laboratories, Massachusetts General Hospital, Boston, MA, USA; Department of Stem Cell and Regenerative Biology, and Harvard Stem Cell Institute, Harvard University, Cambridge, MA, USA.
miR-212 is down-regulated and suppresses methyl-CpG-binding protein MeCP2 in human gastric cancer.
Wada R, Akiyama Y, Hashimoto Y, Fukamachi H, Yuasa Y.
Int J Cancer. 2009 Dec 17.
Department of Molecular Oncology, Graduate School of Medical and Dental Sciences, Tokyo Medical and Dental University, Tokyo, Japan.
Research progress of Rett syndrome causing gene MECP2--The structure, function and modulation of MECP2.
Zhang JJ, Bao XH.
Beijing Da Xue Xue Bao. 2009 Dec 18;41(6):712-5. Chinese.
Department of Pediatrics, Peking University First Hospital, Beijing 100034, China.
Ischemic preconditioning regulates expression of microRNA s and a predicted target, MeCP2, in mouse cortex.
Lusardi TA, Farr CD, Faulkner CL, Pignataro G, Yang T, Lan J, Simon RP, Saugstad JA.
J Cereb Blood Flow Metab.
Robert S. Dow Neurobiology Laboratories, Legacy Research, Portland, Oregon, USA.
Loss of MeCP2 in aminergic neurons causes cell-autonomous defects in neurotransmitter synthesis and specific behavioral abnormalities.
Samaco RC, Mandel-Brehm C, Chao HT, Ward CS, Fyffe-Maricich SL, Ren J, Hyland K, Thaller C, Maricich SM, Humphreys P, Greer JJ, Percy A, Glaze DG, Zoghbi HY, Neul JL.
Proc Natl Acad Sci U S A.
Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX 77030, USA.
Dosage-dependent severity of the phenotype in patients with mental retardation due to a recurrent copy-number gain at Xq28 mediated by an unusual recombination.
Vandewalle J, Van Esch H, Govaerts K, Verbeeck J, Zweier C, Madrigal I, Mila M, Pijkels E, Fernandez I, Kohlhase J, Spaich C, Rauch A, Fryns JP, Marynen P, Froyen G.
Am J Hum Genet. 2009 Dec;85(6):809-22.
Human Genome Laboratory, Department for Molecular and Developmental Genetics, VIB, B-3000 Leuven, Belgium.

Legal Representation
IRSF is curious about your needs for legal representation as it relates to issues connected to your child with Rett syndrome. Please take our 4-question survey now and we will share a summary of all responses.
Parental Stress when your Child has a Developmental Disorder: Helpful Tips and Coping Strategies
Baylor College of Medicine hosted a seminar at the Children's Museum in Houston for parents of children with developmental disorders. M. Paige Powell, Ph.D., Coordinator, Psychology Program for Developmental Disorders, Psychology Service, Texas Children's Hospital, Assistant Professor, Department of Pediatrics, Baylor College of Medicine presented "Parental stress when your child has a developmental disorder: Helpful tips and coping strategies".
Over 60 parents were in attendance along with Dr. Alan Percy & Dr. Daniel Glaze.
Dr. Powell stressed the four factors that have been found to lessen the stress associated with parenting a child with a disability:
- A strong marital relationship
- A strong social support system
- Good problem solving skills
- Good financial resources
Dr. Powell also stressed that maintaining your OWN mental health was key.
- Treat your body well, exercise
- Treat your mind well, hobbies and activities - HAVE FUN
- Pace yourself and your family's schedule - you can not do everything and please everyone
- Give yourself a break - if you need help, ASK
- Get enough sleep
- Find areas in your life that you can control in order to balance the loss of control associated with your child's disability
- Obtain information
- Get help
- Learn to relax (website - Inner Health Studio, has free relaxation downloads)
- Watch what you are thinking - maintain your optimism and hope
- Solve the little problems
- Build your resilience
- Engage in healthy, problem-focused coping strategies (make goals and keep track of your progress)
- Avoid unhealthy coping strategies such as substance use and overeating
- Learn your stress signals
- Remember that change is a challenge and a normal part of life
- Seek professional help when needed
- A strong marital relationship
- A strong social support system
- Good problem solving skills
- Good financial resources
- Treat your body well, exercise
- Treat your mind well, hobbies and activities - HAVE FUN
- Pace yourself and your family's schedule - you can not do everything and please everyone
- Give yourself a break - if you need help, ASK
- Get enough sleep
- Find areas in your life that you can control in order to balance the loss of control associated with your child's disability
- Obtain information
- Get help
- Learn to relax (website - Inner Health Studio, has free relaxation downloads)
- Watch what you are thinking - maintain your optimism and hope
- Solve the little problems
- Build your resilience
- Engage in healthy, problem-focused coping strategies (make goals and keep track of your progress)
- Avoid unhealthy coping strategies such as substance use and overeating
- Learn your stress signals
- Remember that change is a challenge and a normal part of life
- Seek professional help when needed
IRSF Joins Facebook and Twitter!
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Once you’ve become a Fan on Facebook, take the opportunity to add a post of who you are and your connection to Rett syndrome, even attach a picture of your Angel within your post to share with all of our fans.
Join Us In Observing Rare Disease Day On Feb. 28, 2010!
To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2010). NORD is coordinating this project in the U.S., and is inviting all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.
Read more about how you can participate: www.rarediseaseday.org
2010 Fundraising Made Easier with New IRSF Online Tool: FirstGiving!
2009 was filled with Strolls, Runs, Walks, Galas, Pig Roasts, Lemonade Stands and more! October Awareness Month boomed with a mountain of Phantom Tea orders and now over 100 Care and Cure Café pages!! Because of YOUR fundraising efforts IRSF is funding cutting-edge research to find treatments and a cure for Rett syndrome. Whether you plan, host, assist or participate in a fundraising event or effort your help is our hope – so thank you! Now that 2010 is underway we would love to hear about your ideas and plans! Some of you host annual events – if so please give the IRSF Staff a heads up as soon as possible of the date and any details you’ve already worked out so that we can best assist you and make this year the best yet! Ask IRSF Staff members how your event’s proceeds can be matched by the $1Million Challenge Grant!! That’s right – SOME OF YOUR PROCEEDS WILL BE DOUBLED!!! Don’t forget to check out our fundraising resources page for all things fundraising like:
- FirstGiving www.firstgiving.com/rettsyndrome. IRSF’s newest tool to help you grow your event by hosting it online! All you need to do is email jgrammer@rettsyndrome.org to have your event added. Once your event is added to the list you and your friends and family can build your very own team and fundraising pages! It’s extremely easy and you’ll receive step by step instructions on how to personalize your page.
- THE CARE AND CURE CAFÉ HAS MOVED! If you have a personalized page in the Care and Cure Café please email jgrammer@rettsyndrome.org for instructions on personalizing your NEW Café page. If you have not yet created your page you can do so at www.firstgiving.com/irsfcareandcure
- As most of you know, IRSF has been awarded a $1Million Challenge Grant to help us kick off our Research to Reality Campaign! If you have not hosted an event in the last couple of years or even ever – NOW is the time to do so! Every dollar raised at brand new events will be matched by this grant. So by raising $20,000 you’ve really raised $40,000!! How great is that?! So far Strollathons in Arizona, Southern California and Florida, a Gala in Washington DC and events in Kansas, Utah and Louisiana are in the planning stages!! Join IRSF’s fundraising efforts in 2010 and help us make this a record-breaking year!
- Click here to read about some amazing families in Baton Rouge, LA that are getting involved. If you would like help getting YOUR local media’s help spreading awareness contact the IRSF office at 1-800-818-7388.
- The IRSF Events pages are filled with stories and pictures of 2009 fundraisers all over the country so be sure to check those out!
Your support is always greatly appreciated. We are here to help make your fundraising efforts as easy and rewarding as we possibly can. For more information on how to plan an event, get involved with an existing event or to just bounce around some ideas please email Jenni Grammer at jgrammer@rettsyndrome.org.
HAPPY FUNDRAISING!
- FirstGiving www.firstgiving.com/rettsyndrome. IRSF’s newest tool to help you grow your event by hosting it online! All you need to do is email jgrammer@rettsyndrome.org to have your event added. Once your event is added to the list you and your friends and family can build your very own team and fundraising pages! It’s extremely easy and you’ll receive step by step instructions on how to personalize your page.
- THE CARE AND CURE CAFÉ HAS MOVED! If you have a personalized page in the Care and Cure Café please email jgrammer@rettsyndrome.org for instructions on personalizing your NEW Café page. If you have not yet created your page you can do so at www.firstgiving.com/irsfcareandcure
- As most of you know, IRSF has been awarded a $1Million Challenge Grant to help us kick off our Research to Reality Campaign! If you have not hosted an event in the last couple of years or even ever – NOW is the time to do so! Every dollar raised at brand new events will be matched by this grant. So by raising $20,000 you’ve really raised $40,000!! How great is that?! So far Strollathons in Arizona, Southern California and Florida, a Gala in Washington DC and events in Kansas, Utah and Louisiana are in the planning stages!! Join IRSF’s fundraising efforts in 2010 and help us make this a record-breaking year!
- Click here to read about some amazing families in Baton Rouge, LA that are getting involved. If you would like help getting YOUR local media’s help spreading awareness contact the IRSF office at 1-800-818-7388.
- The IRSF Events pages are filled with stories and pictures of 2009 fundraisers all over the country so be sure to check those out!
Regional Representative Program
Reach out and meet your Regional Rep today!
Make sure your Rep has you on his/her list so you can be informed of family gatherings and fundraisers. Each IRSF Rep very much wants to get to know ALL families! Please contact at Jennifer Endres or 508-362-2220 if you have trouble connecting with your Rep or if you have questions about the program.
Would you like to become a part of the Regional Rep Team?
IRSF has recently received some interest in filling the position of Regional Representative for a few of our vacant states! Be a pillar of support for Rett families in your state and get all of our Regional Representative positions filled! Please contact Jennifer Endres at jendres@rettsyndrome.org for more information and details. The following states remain in need of a Rep:
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Alaska
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Montana
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New Mexico
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North Dakota
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Vermont
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Wisconsin
Wyoming
IRSF Networks
IRSF offers three special interest support networks known as the Grandparents Network, The Dads Network and the Parents of Males with MECP2 Mutations Network. These networks provide the support needed to understand and overcome the unique obstacles that having a child with Rett syndrome or a MECP2 Mutation brings to a family and in turn the members of these networks will help their family understand and overcome as well.
These Networks will:
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Address the specific concerns of these unique parents, which are often different from those of parents with daughter with Rett syndrome
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Provide information in regard to care giving, emotional and physical demands, role within the family, relating to the child and other areas identified
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Provide a forum to exchange experiences and ideas
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Create a Network Directory
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Expand sessions offered for these networks at the annual Conference
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Enlist willing parents and grandparents in building awareness of Rett syndrome within their various communities
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Dedicate one section of Rett Gazette newsletter to these Networks
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Build relationships between the members of these core groups and IRSF
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Provide appropriate avenues for raising funds to support IRSF's mission
Join one of our support networks today!
The Parents of Males with MECP2 Mutations Network
The Dads Network
The Grandparents Network
Questions?
Contact Jennifer Endres at jendres@rettsyndrome.org or call 508-362-2220
The Dads Network
The Grandparents Network

IRSF Cheers on American Idol Contestant
IRSF would like to wish good luck to Angela Martin on Season 9 of American Idol. Martin made it through to Hollywood. Check her out on YouTube.
We hope Angela succeeds in her quest!
Registration Now Open!
26th Annual Conference
"Ain’t No Mountain High Enough"
Cheyenne Mountain Resort
Colorado Springs, CO
Memorial Day Weekend
May 28-31, 2010
Mark your calendars – make your plan! This conference offers the information, materials, and inspiration necessary to blaze our trails forward. There “Ain’t No Mountain High Enough” when you are well-informed and well-equipped! Be a part of our 26th conference. We look forward to seeing you there.
Conference Financial Planning Tip:
- Always check with your child's Case Manager first as she may have info for financial resources to attend conferences
- If your child has a DD Medicaid Waiver you may stipulate some waiver funds for "Family and Caregiver" training which will pay for conference fee
- Check with local "First Steps", Early Intervention, Mental Health Assoc. to see if funds are available
- Contact the Governor's Planning Council- Family Consumer Involvement funds on the website to apply for a grant
- Check with INsource to see if funds are available (can Google or search)
- Always check with the local clubs to see if assistance is available such as Elks Club, Lions Club, and Knights of Columbus
- Ask family members to help financially with your ISRF conference costs in lieu of birthday, holiday, anniversary etc. gifts
- Some company Flexible Spending Accounts (FSAs) will reimburse for registration fees, and possibly travel expenses, for education conferences on a diagnosed medical condition with a doctor’s prescription. Ask your company’s benefits administration department about eligibility.
Event Calendar
- February 6-7, 2010: New Jersey | Natural History Research Study NJ VIII
- February 13, 2010: Ontario, CA | 1st Annual So Cal Strollathon
- February 28, 2010: USA and International | RARE DISEASE DAY
- March 5-6, 2010: Richmond, Texas | 8th Annual Texas Rett Camp
- March 6, 2010: Glastonbury, CT | 2nd Annual Rett Angel Gala

